tag:blogger.com,1999:blog-13537212826745434872024-02-19T17:01:29.061-08:00Matters of the HeartMatt and I have been married for 7 years. We have a two-year-old son, Graham, who has extensive health issues including Tetralogy of Fallot and severe Tracheobronchomalacia. We also have 5 month twins. Much of our story right now revolves around fighting for our son's health and striving to give God glory in the midst of the craziness. We are thankful for all those who pray for and love our family.Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.comBlogger125125tag:blogger.com,1999:blog-1353721282674543487.post-84942792084967091912017-12-12T19:50:00.002-08:002017-12-12T19:50:39.824-08:00Graham's Birthday - October 2<div class="MsoNormal">
Graham's 5th birthday came without him on October 2nd. Matt and I decided to have a few friends and family over to remember Graham together. We wanted to watch videos and tell stories and reminisce about our sweet boy. We figured people would want to acknowledge his birthday and perhaps not know how so, we told them! Everyone brought a gift that Graham would have liked and we took them to the Children's hospital at UNC. Then on Graham's actual birthday we took the kids to the zoo. A place we took Graham. A time to remember and a time to distract ourselves!</div>
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These are the words I shared at the birthday celebration:</div>
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I had many nicknames for Graham. And more than once a day I
would go through my list and he would shake his head yes or no as to which one
I could call him. “Graham, are you my sugar lump? My pumpkin pie? My muffin
top? My stinky dink? My pookie doo? My snooki snook?”<o:p></o:p></div>
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I miss him terribly. I miss holding him. I miss his smile. I
miss watching him dance and reading him books. I miss being constantly in awe
of him for how smart and how brave he was.<o:p></o:p></div>
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Graham endured much suffering during his short life. As I
attempt to process all that has happened I play each scene over and over in my
head and wonder how differently things might have been if this had happened or
that hadn’t happened. But I always manage to come full circle, back to God’s
sovereignty. If God had wanted things to turn out differently for Graham then
He would have orchestrated that. We could have lost Graham many times during
that awful 6 month stay at Duke Hospital. But we were blessed with two more
years with him. Two years to make precious memories with his siblings and to
get a genetic diagnosis that gave us some needed answers.<o:p></o:p></div>
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Thankfully, most days, Matt and I are both able to accept
what has happened and continue to trust in the Lord for strength to carry on. I
am so thankful for that and I attribute that to the many prayers of our friends
and family.<o:p></o:p></div>
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I heard another bereaved parent say that he felt like the paralytic
in the gospels whose friends carried him to Jesus on a mat and lowered him
through the roof to be healed. When we have been so paralyzed by trauma and now
grief, our friends and family have picked us up and carried us to Jesus. I know
many of you have probably prayed harder for Graham and our family than I myself
have. I’m so grateful. Thank you for continuing to carry us to Jesus.<o:p></o:p></div>
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It brings me great joy when Ben or Hallie mention Graham.
They seem to accept the idea that “Graham is in heaven with Jesus.” I don’t
think they understand it but they have an answer, and they can repeat it. Occasionally
they mention him, and Matt and I talk about him too. Mostly when we doing
something Graham liked to do or playing with a toy that Graham liked. A few
weeks after Graham passed we were swinging outside and Ben said, “Mommy, I wish
Graham could come back home.” He was thinking of Graham because he loved to
swing and now his swing was empty. <o:p></o:p></div>
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Just this week while riding in the car, the Hokey Pokey came
on. Hallie said “Mommy, Graham really liked this song. He liked to dance to
this song at the library at story time.” I said, “Yes, he did, baby.” Then she
said, “When Graham comes home we can play this song and dance with him.” As my
eyes filled with tears, I said, “Baby, Graham isn’t going to come back home.
He’s going to stay in heaven forever. But one day, we will get to heaven to be
with him. And then we can all dance together. How’s that sound?” “Ok.” Then Ben
chimed in with “But first we have to get baptized so we can go to heaven.” They
are excited about baptism since their cousin, Hayes, got baptized this summer.
I assured them that you only have to be believe in Jesus to go to heaven. But
it’s good to get baptized to show others that you do believe in Jesus. “Ok.” <o:p></o:p></div>
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Thinking about seeing Graham again one day in heaven gives
Matt and me great hope. In fact, I often pray, begging Jesus to come back soon
and end the pain and suffering of this present world. It seems the veil between
heaven and earth gets a little thinner once you have somebody so dear on the
other side. Don’t get me wrong, it still hurts like hell even though we know Graham
is in heaven. But I read these sweet words recently, that when we see him again,
Graham will thank us for enduring the loss so that he could have his reward
sooner.<o:p></o:p></div>
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Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-64597775995676398062017-07-14T12:32:00.001-07:002017-07-15T19:56:06.095-07:00A letter to Graham from Daddy<div class="MsoNormal" style="line-height: 24px; margin-bottom: 6pt; text-indent: 0.5in;">
<span style="font-size: 12pt; line-height: 24px;">In the last days of Graham's life Matt somehow had the strength and presence of mind to write this letter to Graham. Matt's brother read it at the funeral. It's been 4 months since Graham died. We miss him so much. I hope to write more in the coming days as we continue to grieve and process all that has happened. </span></div>
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<span style="font-size: 12pt; line-height: 24px;">(This is the portrait that a friend made for us for the funeral and now it hangs in our living room and I stare at it every day! We miss that sweet face.)</span></div>
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<span style="font-size: 12pt; line-height: 24px;">This letter is by far the most difficult I have ever had to pen. No one ever expects to lose a child, and even though we have known for some time that this day would most likely come, nothing can ever fully prepare you for that day.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Graham was the bravest, strongest and most intelligent 4-year-old that I have ever known. Considering all that he has been through: heart surgery, neck surgery, surviving ECMO, trach placement, hospital stays that number over 8 months total, and the constant needle sticks, trach changes and everything else associated with caring for someone who was as medically-involved as him. I have never seen nor known someone go through all that he has (or even close to it) and still remain joyful about simple things in life. Most people would be highly depressed simply based on the surgeries and hospital stays alone. Yet Graham endured all of this and accepted his life and found ways to enjoy it and not be limited by his challenges and difficulties. None of this even considers the fact that his vocalization was that of a one-year-old. He could enunciate about seven words: mommy, daddy, Ben, Hallie, I love you, bye-bye and night-night; and most of these you would really only understand if you had spent a considerable amount of time with him.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">These words, however, pale in comparison to his actual vocabulary. His ability to spell and use his “talker” proved that he had the capacity of someone much older than 4-years. He could spell his full name, family names, all of his cousins’ names, at least 20 different animals and probably 20 or so other nouns and phrases. He knew his alphabet, lower case and upper case, numbers, and of course, all of his colors. You could put a stack of 15 or 20 books from a series in front of him, and he could tell you right away exactly which book was missing. The fun part of that game was guessing which book you couldn’t find.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Graham also had severe skeletal dysplasia including significant scoliosis. He didn’t sit up on his own until about 1-year and didn’t walk on his own until about 1 1/2-years. He never really crawled, but rather sat down and used his feet and legs to scoot along the floor. Thus my nickname “scooter” for him for quite some time. Graham never had the ability to run or jump. He never got to truly jump on a bed, or wrestle with daddy, or get tossed in the air, or learn to kick a ball or many other physical activities. But this never stopped him from reaching out and grabbing one of the twins by their neck for a big ol’ hug when they were least expecting it. Sometimes this meant that Graham accidentally “tackled” them when his intentions were to love on them. The sweetest memories of these three were definitely when Graham felt an urge to hug them, then reached out and the twins decided it was easier to just hug Graham instead of getting a choke hold or tackled.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Graham also loved music and dancing. Some of his favorite things to do were dance along and do hand motions to many different kids’ songs. Many days were spent in his bed (during his supposed nap time) watching kids’ music videos and dancing along instead of resting. I guess he thought it was more important to have a good time, listen to music and enjoy life than take a nap. Sometimes it was hard to blame him.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Graham loved his toy lions. He has had many different lions in his life including stuffed lions, lion stickers and a lion costume, but none of them have come close to being his favorite as the two plastic lion figures he slept with every night. A good friend pointed out one time how fitting it is that Graham would choose a lion as his favorite toy. She said this was proof that Graham knew who the real Lion was, the Lord Jesus, and that Graham would look to the Lion for security and protection, just as he does to his toy lions. The Lord Jesus Christ is Graham’s true Lion, and He will always be Graham’s security and protection.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Even though Graham’s life was physically limited and quite short, his impact on others is significant. I will never know, this side of heaven, all of the people that prayed for him and for us. Many people who prayed for Graham probably did not know us, his parents or immediate family, but they knew of Graham, his strength, his fight, his battles and his character. His life was short, but his impact was great. Graham taught me patience. He taught me endurance. He taught me that whatever I had going on in my life separate from taking care of him, it was small potatoes compared to what he had endured. If Graham could have joy, then I have no excuse to not have it either.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">These past few years have been a tough road for Liz and me. The last several months in particular have mostly been survival. Many things in life are put on hold when you experience such as we have. But I have told Liz many times, I would not trade it. Having Graham has been a joy and the Lord has taught me many things through him and in taking care of him. Do I wish he were still here? Absolutely. Do I wish he had been healed? With all of my heart. But I know the Lord has had great plans for our lives, and He is still unveiling those plans through this. I have full confidence in knowing that Graham is with Jesus; he doesn’t need a ventilator; he doesn’t have trouble breathing; he doesn’t need his talker; he can talk and sing and dance with Jesus.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">If you know anything about Graham, you know how much of a momma’s boy he is. The hardest thing I have ever heard in my life was when Liz told me some months ago: when Graham dies and goes to be with Jesus, he won’t need his mommy anymore. It was the most piercing thing I have ever heard. It was scary to think that Graham would be somewhere that his mommy was not. But on the other hand, he will be with Jesus and he won’t know what it’s like to miss someone or miss something. He will have Jesus and that is all he will need.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">We miss you Graham, but it’s okay, you don’t have to miss us because you have Jesus and we will see you soon.<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Love,<o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 24px;">Daddy</span></div>
Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-89538744163709343442017-03-17T07:13:00.001-07:002017-06-28T17:19:34.106-07:00Breathing Easy<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Graham went to be with the Lord on Wednesday afternoon. His kidneys finally gave out on him. He went peacefully in my arms, surrounded by family and friends. He is completely healed and breathing easy in heaven. We appreciate your continued prayers in the days to come for our family.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Graham's funeral will be at Providence Baptist Church in Raleigh on Saturday at 1pm, with visitation following. The burial will be at Hillcrest Cemetery in Colerain, NC on Sunday at 3pm. We are using City of Oaks Funeral Home.</span>Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-78464006162460640432016-12-16T19:27:00.002-08:002016-12-24T09:20:16.085-08:00Stage 5 Kidney FailureIt's time to update everyone on Graham's health and treatment. We asked publicly for prayer a while back in making some decisions about his treatment and so I want to share what we have decided. We found out at the end of the summer that Graham's kidney failure was progressing much faster than expected. We were told he had a couple of years before we would be discussing dialysis or transplant and instead we had a few months. <div>
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Graham's nephrologist contacted the kidney transplant team at UNC who quickly turned Graham down for transplant and refused to even meet with us. Since we were unable to get any information from UNC we decided to pursue a second opinion from the Children's Hospital of Philadelphia. They too turned Graham down for evaluation for transplant. The main concern is Graham's tracheostomy and lung issues. To keep a new kidney happy the patient must be fluid heavy for a while which would increase Graham's breathing difficulties. And a person with a transplant remains on immunosupressants their whole life to keep their own immune system from rejecting the foreign organ. Having a trach makes a person more susceptible to infections which wouldn't be good for somebody with a suppressed immune system. It was long, stressful road to find out that Graham would not be eligible for a kidney transplant. </div>
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Once we knew that transplant was not going to be an option we still had to decide whether or not Graham would do dialysis. Because of Graham's small size, heart issues, and other issues he would not be eligible for hemodialysis (the kind most adults do where they go have their blood cleaned several times a week at a dialysis center). But we could do peritoneal dialysis at home. This would involve surgery to put a catheter in his abdomen and putting a solution into his abdomen and emptying it out every night to get rid of toxins that the kidneys are supposed to filter out. The infection risk is very high. The survival rates for children on peritoneal dialysis are not impressive. 80% in the first year. 50% in the second year. Because of Graham's lung issues it was likely that this type of dialysis would cause his lungs to stay too wet and increase his breathing difficulties. Matt and I really struggled with the deciding on dialysis. We knew that our goal for Graham was the least amount of suffering, not necessarily the longest life. In the end his pulmonologist who is also head of the pediatric palliative care team at UNC helped us realize that nothing in Graham's overall health would improve to the point of qualifying for transplant in the next couple of years so its not like if Graham made it through dialysis for a while then there was hope of a recovery. And she let us know that our nephrologist was "going against the grain" to even make dialysis an option for us, but that she offered it because Graham is such a unique case and he was still at home enjoying life. So, after much prayer and much counsel and many tears we decided not to pursue dialysis. We will continue to treat Graham with other medicines to keep him feeling well as possible as long as we can. </div>
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Graham is now in stage 5 kidney failure. We do not know how long we have with Graham but it is likely less than six months. We are begging God for more time and trying to make the most of the time we have. We just got back from a wonderful trip to Christmas Town at Busch Gardens through Make-A-Wish. Please pray for our family as our days are difficult emotionally and physically. Coordinating all of Graham's care is overwhelming. Despite Graham's declining health he continues to learn and enjoy life. He has recently learned his alphabet and how to spell his name! He is such a sweet special boy and we love him so much! </div>
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Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com3tag:blogger.com,1999:blog-1353721282674543487.post-71847342341643193072016-11-22T13:34:00.001-08:002016-11-22T13:34:42.520-08:00SummerWell... I suppose it's about time I post a few updates. I have some health updates about Graham to share soon but I think first I will share what a great summer we had.<br />
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We kicked things off by taking Graham to the zoo! He had a good time. He had a hard time seeing some animals that we were far away or not moving or in dark enclosures. But he got to feed giraffes up close that was so cool!<br />
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We made a family trip to my parents' house on the Chowan River. This was Graham's first time to my parents since coming home from the hospital with trach/vent/gtube. And this was his second over night trip (we went to the Laneys' at Christmas last year). We had a great time on the water! We got to take a night nurse with us which was really nice.<br />
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NC Zoo</div>
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July 4th with friends and fireworks</div>
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Trip to the River</div>
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Fun on the deck with pool and water table</div>
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-50375202923320135462016-05-03T08:44:00.001-07:002016-05-03T08:45:44.573-07:00Graham's Gtube FeedingsWe recently had to change Graham's recipe for his gtube feedings because of the progression of the kidney disease. He needs a diet low in protein, phosphorous, and potassium. The doctors would have preferred to put him on a "renal formula" but Graham doesn't do well on formula. The nutritionist with the kidney clinic has been very helpful in creating a blend of real foods that meets Graham's needs. Though she is inexperienced at creating blenderized diets, she is willing, and she does have the nutritional knowledge that I lack. I mean, what is phosphorous, anyway?<br />
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-- Note -- If you don't have a child with a feeding tube then this will likely bore you.<br />
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<b>A Little Background:</b><br />
Graham got his feeding tube placed in December 2014, in the middle of his 6 month hospital stay at Duke. He needed to grow for his lungs to get better and at the time he was not allowed to eat by mouth because of the risk of aspiration when we had his bipap on. (He received the trach in February 2016). He was started on a commercial formula (many different kinds) and for the next four months he was miserable. He was in pain. His reflux was out of control. He vomited frequently. He was put on several GI meds to help him tolerate feeds. We were told he had delayed gastric emptying. We were forced to attempt feeding him in his jejunum (jtube - intestines - bypassing the stomach). This meant 3 trips to radiation to place the jtube. We would turn off the feeds and within an hour he was sitting up and ready to play. Restart feeds and he was miserable.<br />
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All the while I was begging the doctors to let us give him real food instead of formula. Graham had been eating real food for 2 years and never had problems like this. However, Duke hospital DOES NOT ALLOW REAL FOOD through feeding tubes. I asked if we could create blends at home. No. Could we give him packaged baby food. No. Could the hospital blend food for him. No. Finally I discovered Liquid Hope, a whole foods blended formula, commercially produced by Functional Formularies and FDA approved. After a few weeks of begging, Duke finally let us try it. He was instantly a different child. More energy. Pain gone. No vomiting. Reflux manageable. Thank you, Jesus. A couple weeks later, he was discharged. Real food was a game changer for Graham.<br />
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Since Graham was discharged from Duke last year we have switched most of his specialties to UNC. The two main reasons for this are that the pulmonologist at UNC allowed him to switch to the Trilogy vent (Duke would not) and UNC allows and even supports blended diet, even while inpatient!<br />
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<b>New Renal Friendly Recipe:</b><br />
Graham was on Liquid Hope blended with avocado and coconut oil for a year. The Liquid Hope is intended for adults and is too high in protein for children so we had to add some things to make it appropriate for a toddler. Just last week they finally released a new pediatric version called Nourish! However, we still have to add some things for Graham because of his new diet restrictions with the kidney disease. It took us a few attempts to get a recipe that blends well and is the right consistency to use the feeding pump. We are now modifying his bags (for infinity pump) to allow for a thicker blend.<br />
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Graham's current recipe:<br />
1/2 packet Nourish<br />
1 cup applesauce<br />
1 cup fruit (peaches, pears, berries)<br />
1/2 cup rice cereal (Beach Nut brand b/c of low potassium)<br />
8 ounces juice (grape or apple)<br />
1 tbsp olive oil<br />
1 tbsp coconut oil<br />
<br />
<b>Soap Box:</b><br />
Tube-fed children deserve real food. In fact they desperately need it to heal and be healthy. Commercial formulas are mostly high fructose corn syrup and fake nutrition. But doctors stick to it because they can track calories and its easy. Please, if you have a loved one that is tube-fed consider a blenderized diet. If your doctors don't support it then find ones who will. I continue to hear from countless families whose children are vomiting and miserable and not growing on formula. Children who are fed via jtube or who have surgeries to prevent vomiting or who are on multiple meds to tolerate formula. Some children have legit GI issues or other special reasons that make formula their only or best option. But many children do much better on real food! The medical field needs to change how tubies are fed but until they do it is up to parents to find a better solution for their children. And you can do it!<br />
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I am happy to discuss anything about tube feeding with you. Her are a few resources if you want more info about blenderized diet for tube feeding.<br />
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<span style="background-color: white; font-size: 14px; line-height: 16px; white-space: nowrap;"><span style="color: #006621; font-family: "arial" , sans-serif;"><a href="http://functionalformularies.com/">functionalformularies.com</a></span></span><br />
<a href="http://www.foodfortubies.org/"><span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">www.</span><b style="background-color: white; color: #006621; font-family: arial, sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">foodfortubies</b><span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">.org</span></a><br />
<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;"><br /></span>
<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">Facebook groups:</span><br />
<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">Blenderized RN</span><br />
<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;">Blenderized Food For Tubies</span><br />
<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;"><br /></span>
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<tr><td class="tr-caption" style="text-align: center;">Ben taking Graham's blood pressure!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">How to modify Infinity bags for thick blends.</td></tr>
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<span style="background-color: white; color: #006621; font-family: "arial" , sans-serif; font-size: 14px; line-height: 16px; white-space: nowrap;"><br /></span>Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-63041784858084442932016-03-24T13:02:00.000-07:002016-04-07T03:06:12.865-07:00A Genetic Diagnosis<span style="font-family: "times" , "times new roman" , serif;">Last week, a year after finally seeing a geneticist, we got a diagnosis from whole exome sequencing. They basically took blood from Graham, me (mom), and Matt (dad) and looked at all the genes involved. Graham has Mainzer-Saldino Syndrome, skeletal displaysia from abnormalities on gene IFT140. There are only 20 known cases ever. It turns out that Matt and I both have an abnormal copy of gene IFT140 and Graham got both of them. The chances of two people marrying that have an abnormality on the same gene are like 1 in hundreds of thousands. But since we do the chances of our kids having this is 1 in 4. So the fact that we had two healthy babies, Ben and Hallie, before we knew about this is a blessing and a miracle!</span><br />
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<span style="font-family: "times" , "times new roman" , serif;">So what does this mean for Graham? Well, it means he will have kidney, vision, and bone issues in addition to the heart and lung issues we are already are facing (Tetralogy of Fallot and malacia requiring trach/vent). The condition causes ciliopathy which means the little cilia that move things in the body are abnormal.</span>
<span style="font-family: "times" , "times new roman" , serif;"><br /><span style="font-family: "times" , "times new roman" , serif;">Graham started having high blood pressures a few weeks ago and now we know why. The kidneys regulate blood pressure. Graham has chronic kidney disease and is in stage 3 (of 5) kidney failure. For now that means we have to use medicines to keep his blood pressure under control. Eventually, it will mean complete kidney failure which means dialysis or transplant if those are possible for Graham.</span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /><span style="font-family: "times" , "times new roman" , serif;">This syndrome is associated with Retinitis Pigmentosa<span style="color: #333333;"> which can eventually lead to blindness. Graham already has limited peripheral vision and can't see well in the dark which are symptoms of this condition. The ophthalmologist says there is no treatment. He hasn't been seen by the ophthalmologist recently so we don't know much more than this. We don't know how long before he has further vision loss. He sees fairly well now as he is able to do puzzles and put beads on a string. But he does run into things on the floor or to his side when walking because he can't see them.</span></span><br /><span style="font-family: "times" , "times new roman" , serif;"><br /></span></span>
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">We also recently went to an orthopedist for the first time. It turns out Graham has a 40% curve in his lower spine. That is quite impressive for a 3 year old. They want to do a sedated MRI to check for spinal tethering (the spinal cord attached to the spine) which could be corrected by surgery. Or it could just be scoliosis. They want to make a plastic back brace for him to wear. This will be complicated because of his bell shaped torso and his respiratory difficulties. Of course we already knew about the stenosis (narrowing) in his upper spine which he has had surgery for and may need more in the future. The genetic condition causes abnormality in bone structure and so growth is stunted. That's all we know for now.</span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /><span style="font-family: "times" , "times new roman" , serif;">So, its not good news. It has been difficult to digest. Through all the crazy health issues and surgeries and hospital stays we have always had reason to hope that Graham would get better as he got older and bigger. Well, now we have found out that he isn't getting better or bigger any time soon. He is actually going to get worse. I type this update while in the hospital for the second time this week, because Graham got a stomach bug which quickly led to dehydration which made his kidneys angry.</span><br /><span style="font-family: "times" , "times new roman" , serif;"><br /></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">It is helpful to have a diagnosis that ties all his health issues together and in some ways it may give his specialists some insight for proper treatment. But there is no cure (yet) for genetic conditions, we just have to treat each issue the best we can.</span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /><span style="font-family: "times" , "times new roman" , serif;">Please pray for perseverance and strength for Matt and I and our family. Please pray for wisdom for his doctors. Please pray for Graham to have some joys through all the sickness and for his salvation. I pray for Jesus to come back soon. Before Graham's kidneys fail and before the November election!</span></span><br />
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<span style="font-family: "times" , "times new roman" , serif;">Here are a couple of recent pics to remind me and you that we do still have some smiles and good days and we thank God for them. </span><br />
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Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com2tag:blogger.com,1999:blog-1353721282674543487.post-13218029910865117382016-01-30T08:56:00.000-08:002016-01-30T08:56:33.103-08:00Jesus talks with GrahamNot too long ago a friend's three old child accepted Christ as her Savior. Praise God. This really made me realize that Graham could be getting old enough to understand salvation. Because Graham doesn't speak it is often difficult to know how much he knows and understands. And I have found that I often underestimate him!<br />
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So, a fire was lit in my soul to start being more intentional about talking about the gospel with Graham. I mean we have always talked about God and read Bible stories and prayed but that's not the same as teaching the gospel. That we are sinful and that separates us from God and Jesus came and died for us so we can have a relationship with God and spend eternity with Him. Graham's complex health issues make me even more eager to make sure he understands the gospel since we have no idea what the future holds for Graham or when his time on earth may end. What a weighty responsibility! And what a privilege! Graham rarely goes to Sunday School or preschool or anywhere else that will teach him about the Lord. It is up to Matt and I and I am so thankful that the Holy Spirit has burdened me with an urgency to share Christ with my son. I pray you will share my urgency to share Christ with your children.<br />
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<span class="text Rom-10-13" id="en-ESV-28186" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span style="font-family: inherit;">For <span class="crossreference" data-cr="#cen-ESV-28186A" data-link="(<a href="#cen-ESV-28186A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>“everyone who calls on the name of the Lord will be saved.”</span></span><span class="versenum" style="box-sizing: border-box; font-family: inherit; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;"> </span><span style="font-family: inherit; line-height: 24px;">How then will they call on him in whom they have not believed? And how are they to believe in him</span><span style="font-family: inherit; line-height: 24px;"> </span><span class="crossreference" data-cr="#cen-ESV-28187B" data-link="(<a href="#cen-ESV-28187B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-family: inherit; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="font-family: inherit; line-height: 24px;">of whom they have never heard. </span><span style="font-family: inherit; line-height: 24px;">And how are they to hear</span><span style="font-family: inherit; line-height: 24px;"> </span><span class="crossreference" data-cr="#cen-ESV-28187C" data-link="(<a href="#cen-ESV-28187C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-family: inherit; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="font-family: inherit; line-height: 24px;">without someone preaching? Romans 10:13-14</span></div>
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Graham has been difficult to get to sleep at night for the last couple of months but we have a routine that is working now which is me rocking him to sleep every night. I decided that instead of being annoyed at this extra work I would use the time to talk to Graham about Christ and to pray over him. So every night after we have completed his lengthy bedtime routine I turn out the light, turn on the sound machine, get Graham and glow worn in my lap and talk to him about Christ as we snuggle. I try my best to explain in three year old terms about salvation and heaven and having a relationship with God. I pray God gives me the words and pray God allows Graham to understand.<br />
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<span style="font-family: inherit;"><span class="text Deut-11-18" id="en-ESV-5227" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;">“You shall therefore lay up these words of mine in your heart and in your soul, and <span class="crossreference" data-cr="#cen-ESV-5227AB" data-link="(<a href="#cen-ESV-5227AB" title="See cross-reference AB">AB</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>you shall bind them as a sign on your hand, and they shall be as frontlets between your eyes.</span><span style="background-color: white; line-height: 24px;"> </span><span class="text Deut-11-19" id="en-ESV-5228" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;">You shall teach them to your children, talking of them when you are sitting in your house, and when you are walking by the way, and when you lie down, and when you rise. Deuteronomy 11:18-19</span></span><br />
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<span style="font-family: inherit;">Just last week as I was talking to Graham about God, the Holy Spirit guided me to tell Graham that even though he can't talk out loud to mommy and daddy he can talk to God in his head. God knows his thoughts and so he can talk to God without using his lips! He can tell God anything and everything and ask him for help and healing. I almost cried as I was talking to him, realizing as I was speaking what an amazing truth and comfort for Graham this could be if he could understand it. Oh I pray he understands and that God will be an ever-present companion to him!</span><br />
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<span style="background-color: #fdfeff; color: #001320; line-height: 20px; text-align: justify;"><span style="font-family: inherit;">"Even before there is a word on my tongue, Behold, O LORD, You know it all." Psalm 139:4</span></span><br />
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<span style="background-color: #fdfeff; color: #001320; line-height: 20px; text-align: justify;"><span style="font-family: inherit;">It is my desperate prayer that my children become believers at an early age. Please God, remind my soul to take time to teach them about you! If you have experiences or suggestions on teaching toddlers about God I'd love to hear from you!</span></span><br />
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-40417379173466417102016-01-19T12:10:00.001-08:002016-01-19T12:10:09.290-08:00Christmas ReviewOh how I wish I had the time to write of all our joys and struggles and how the Lord provides and sustains. We had a wonderful Christmas, at HOME with our WHOLE family! Last year Graham was in the hospital and we had take out Chinese in the hospital for Christmas dinner. Praise God for allowing us to spend this Christmas together at home.<br />
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My (Liz's) parents and brother came and spent Christmas Eve and Christmas Day with us. My mom prepared some delicious meals for us and my brother got a good dose of birth control from being around my three kiddos. We attended Christmas Eve service at our church for the first time and enjoyed that.<br />
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After Christmas we traveled to Matt's parents for a couple nights. This was our first time traveling with Graham since he has had the ventilator and gtube. We had no nursing while we were there so we were busy and tired. But it was nice to be there with all of Matt's family. Nothing went catastrophically wrong, we didn't forget any important equipment or meds and we had no equipment failures. Graham did get a few impressive booboos from his cousins. But all in all it was mostly a successful trip.<br />
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<tr><td class="tr-caption" style="text-align: center;">helping decorate the tree (all fun and games til Ben smashed a glass ball and cut his hand)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cutest little Santa ever</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">handprint Christmas tree</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">handprint reinder antlers</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw6livLoTjufVLL5e_Rgm6mzfPEjYC-9_YnHzlrAYwwPG3wZbPa2aru5nWT1b6my0ckyJBMHj2z8WL9iIwBzi4wn13QemMsihxan9qcSdz2iSB2Y2l_pKAOuuP4SCxs5UaRcvilo4z9pE/s1600/DSC03619_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw6livLoTjufVLL5e_Rgm6mzfPEjYC-9_YnHzlrAYwwPG3wZbPa2aru5nWT1b6my0ckyJBMHj2z8WL9iIwBzi4wn13QemMsihxan9qcSdz2iSB2Y2l_pKAOuuP4SCxs5UaRcvilo4z9pE/s320/DSC03619_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">cooking dinner</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">feeding Cookie Monster his cookies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-v5OkQ4JIDljBIK6XGJ2a5cvlgk5bgjPhg3uLT-YbVAc5yS-P8s3CXLluTEPxn9oI7o1Qtn6XwAHswPd-f07zQglN2-WYM8crrGJNGGZLSBmI80BEo2Ck1EWqch-r5ncV3sE8B2OZPA/s1600/DSC03689_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-v5OkQ4JIDljBIK6XGJ2a5cvlgk5bgjPhg3uLT-YbVAc5yS-P8s3CXLluTEPxn9oI7o1Qtn6XwAHswPd-f07zQglN2-WYM8crrGJNGGZLSBmI80BEo2Ck1EWqch-r5ncV3sE8B2OZPA/s320/DSC03689_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">gingerbread house - Graham mostly supervised and threw candy on the floor</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLnx0YOnpShSUB_0JHoc3bpwPXRREAg8uLBKLjIVnbPsqmYzkpWVPGOiNmLkUV2HJ-cVbgDcewgYiOb3RS2qD8a1EKaOpcl5a6LLKUcErhpxh-uDmxL9h-5xF6DfXzdlpslAInfxZFOGY/s1600/DSC03740_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLnx0YOnpShSUB_0JHoc3bpwPXRREAg8uLBKLjIVnbPsqmYzkpWVPGOiNmLkUV2HJ-cVbgDcewgYiOb3RS2qD8a1EKaOpcl5a6LLKUcErhpxh-uDmxL9h-5xF6DfXzdlpslAInfxZFOGY/s320/DSC03740_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">reading books with daddy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicKHe0MHxSZmDS4BGdFNKIwIYN8j1m2ZAVgRT42oO3RkJUmYk04CJKFyNQyTVjyqGJ6udfmqX8xYtItmH8q_TIphn8ch9ZY4lF0yVNEjx-AoRqsAvz9li9XFdnqQb4rsFPN23fFIBpEm8/s1600/DSC03743_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicKHe0MHxSZmDS4BGdFNKIwIYN8j1m2ZAVgRT42oO3RkJUmYk04CJKFyNQyTVjyqGJ6udfmqX8xYtItmH8q_TIphn8ch9ZY4lF0yVNEjx-AoRqsAvz9li9XFdnqQb4rsFPN23fFIBpEm8/s320/DSC03743_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the pantry provides lots of entertainment</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXhy_RomdjpV4AGAqPUyHe2Cn2uJvDit_Evo_6hPrNt3HrWwxnx72OcAp64rHsktANaS3EGm2Jk_FLj8KmXpGtIO_6go6zoUcEkDAzDYi35gduV2JlQBz5rGEWRvNdfPdqHOsn2H1cr-s/s1600/DSC03778_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXhy_RomdjpV4AGAqPUyHe2Cn2uJvDit_Evo_6hPrNt3HrWwxnx72OcAp64rHsktANaS3EGm2Jk_FLj8KmXpGtIO_6go6zoUcEkDAzDYi35gduV2JlQBz5rGEWRvNdfPdqHOsn2H1cr-s/s320/DSC03778_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas Cookies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJeTAtvAjd1D0d2VvoLeq4DE9xGerV37ynE-DmaAJPwXXJOkC2I6QwM65lza7J5omdSzDsrewZqlX5TxbWDzQjz4iSfvujkrCyhWI79OhxHEy3cMFTJHNff72-rolcRL81Kkv00cZQrc/s1600/DSC03858_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJeTAtvAjd1D0d2VvoLeq4DE9xGerV37ynE-DmaAJPwXXJOkC2I6QwM65lza7J5omdSzDsrewZqlX5TxbWDzQjz4iSfvujkrCyhWI79OhxHEy3cMFTJHNff72-rolcRL81Kkv00cZQrc/s320/DSC03858_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ben's favorite toy for a week - wrapping paper roll</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCO7dcvZYMssJUw9mEbHx3XSdlVub5HyQt0wE0fRCPLOqd3OvAkWludbGGtB8cHXZKTfKKFryVA-7Cy2JUCMhYRc5SFaxN6SRiFaU1iXHHHDnjAJJ6rObZn9t0bdU3qbnaKjYxuGAY7SQ/s1600/DSC03866_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCO7dcvZYMssJUw9mEbHx3XSdlVub5HyQt0wE0fRCPLOqd3OvAkWludbGGtB8cHXZKTfKKFryVA-7Cy2JUCMhYRc5SFaxN6SRiFaU1iXHHHDnjAJJ6rObZn9t0bdU3qbnaKjYxuGAY7SQ/s320/DSC03866_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">look what Santa brought!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHWSzvzG3kPEPo36oz-EkUuzgVOmSWNumvxSa58tsANzsVeWZbYvvQ3pZOnGlsyUGlG-0tjVq8wTT9gU72dkhITlE_q4Hn_EeO8bUVbq7n1rK_SHr-fcftFf3Yyn-TKQsKWMIrZUStcJ8/s1600/DSC03938_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHWSzvzG3kPEPo36oz-EkUuzgVOmSWNumvxSa58tsANzsVeWZbYvvQ3pZOnGlsyUGlG-0tjVq8wTT9gU72dkhITlE_q4Hn_EeO8bUVbq7n1rK_SHr-fcftFf3Yyn-TKQsKWMIrZUStcJ8/s320/DSC03938_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hallie got a baby doll from each grandmother</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1ohhfJ2rSpiIx1lHBV_6TItLtezIhZcrmZHy8eBFG6lOQo0fJt3AfwlJugX1vAbU6TnWusGsInf_z47OxUcEIzkdsMJ-gjjfj3I-ANwPXRlig1a9aaAaQho0_EI5Scj62z3ps9NEbClk/s1600/DSC03949_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1ohhfJ2rSpiIx1lHBV_6TItLtezIhZcrmZHy8eBFG6lOQo0fJt3AfwlJugX1vAbU6TnWusGsInf_z47OxUcEIzkdsMJ-gjjfj3I-ANwPXRlig1a9aaAaQho0_EI5Scj62z3ps9NEbClk/s320/DSC03949_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz's family - brother, Perry</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzQEKS8jczzG7-CZ5DzEevp9VZOR1rZvrn9-YO1R_OlhRDPx4HJqIDE_h3I6FpTicMx_xxIBwh_WVNPzRFiSh2TmARcCYcMM6NnPiUBJPliFS18R7PGCOzXjMb3PrsHCyR4KgtsGCHrNQ/s1600/DSC04036_fav.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzQEKS8jczzG7-CZ5DzEevp9VZOR1rZvrn9-YO1R_OlhRDPx4HJqIDE_h3I6FpTicMx_xxIBwh_WVNPzRFiSh2TmARcCYcMM6NnPiUBJPliFS18R7PGCOzXjMb3PrsHCyR4KgtsGCHrNQ/s320/DSC04036_fav.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matt's brother's family - Jason, Joy, Hayes, Titus</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Matt's sister's family - Robin, Nathan, Noah, Zachary</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hay ride at Matt's parents' house</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">all the Laney grandkids</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The whole Laney family (a few members are hiding in this pic. oops.)</td></tr>
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-85776687565833042612015-10-15T12:37:00.001-07:002015-10-15T12:37:27.641-07:00Home Nursing is a Blessing but It's Not Always EasyThanks to the CAP/C program Graham qualifies for a nurse 126 hours a week. Matt and I have arranged our hours such that Monday through Friday we have a nurse 8am to 6pm and then 10pm to 8am. And then Saturday we have a nurse until 1pm and then Saturday night and Sunday night. All the hours we don't have nursing Matt or I need to be with Graham. Graham is fairly stable on the vent but things can get serious real fast for Graham if something happens.<br />
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Having a nurse to help care for Graham has been a blessing in many ways because it allows me to go the grocery store, or care for the babies, or take a shower, or travel in the car with Graham. But it is also very difficult to entrust Graham's care to strangers. We have had 20 or more nurses since Graham came home in April. Some of them are very experienced with trachs and vents and others don't have a clue what they are doing. So I have learned that I must evaluate the nurses and not assume they know everything. In addition to having the necessary medical knowledge and experience a nurse needs to be able to get along well with Graham and with Matt and I.<br />
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We had a great nurse 4 days a week that recently took another job outside of home health. She adored Graham and he adored her. We are pretty devastated. We have some other good day nurses that are taking over but this other nurse was just such a great fit for our family. No nurse is going to love Graham as much as me or do everything the way I would do it. But I have to run our household and care for the twins too, so I need help. Getting and keeping good nurses is a constant struggle and prayer need for us!Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com2tag:blogger.com,1999:blog-1353721282674543487.post-31757061095473003652015-10-07T09:28:00.000-07:002015-10-07T09:28:14.080-07:00October is for BirthdaysGraham turned 3 last Friday (October 2) and the twins will turn one on October 21. Last Saturday we had a Sesame Street birthday party to celebrate. We invited a few friends and family. We did things easy: bought all decorations at Party City, cupcakes at Harris Teeter, and pizza from Dominos!<br />
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We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.<br />
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I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.<br />
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com2tag:blogger.com,1999:blog-1353721282674543487.post-11763226307803877912015-07-07T09:51:00.001-07:002015-07-07T09:51:25.658-07:00Nom. Nom. Nom. I will start with the biggest and best news first... Graham is eating by mouth! Graham had a swallow study on June 30th and he aced it. He was completely cooperative, letting us strap him in a tiny seat enclosed by an xray machine. He willing took all foods and drinks and swallowed perfectly on all consistencies. He is approved to take WHATEVER he wants by MOUTH!!<br />
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The speech pathologist was stunned. She couldn't believe that with Graham's respiratory history and not eating for 6 months that he did so well. She put her hand over the trach on the xray image and said if the picture didn't show the trach we wouldn't be able to tell it was there from his swallow pattern! Graham's home nurse was in tears and I was close. (I don't cry anymore. A 6 month hospital stay for your 2 yr old will do that. It will come back one day.)<br />
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We praise God for this milestone. It really is a MIRACLE. If you recall we had him on thickened liquids and pureed foods in feeding therapy last fall. Now after intubation causing some vocal cord paresis and the tracheostomy and not eating anything since January he is swallowing perfectly?!?! God answers prayer!!<br />
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This is such a game changer for our whole family. Graham is THRILLED to be eating again. We have not eaten or talked about food in front of Graham for months and now he can sit at the table with everybody else and eat. We are taking it slow with easy to eat foods such as crackers and applesauce. We are trying to get him in the UNC feeding clinic to for help moving forward and guidance on weaning gtube feedings once he is consuming more by mouth. Right now eating is more of a quality of life thing for Graham. The gtube will be around for a good while still and we are ok with that.<br />
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<b>Look mom, no vent!</b><br />
Graham has also been approved by the pulmanologist for 30 minute daily trials off the ventilator! (He still has the trach in his neck but it isn't connected to the vent.) Graham can breathe well enough on his own for 30 minutes as long as he is playing happily. If he gets anxious or upset then his airways start to collapse and he has to go back on the vent. A small step in the right direction.<br />
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<b>Nurses</b><br />
We have one day nurse four days a week that we absolutely love. She adores Graham and he adores her. It is such a blessing to have somebody that we feel comfortable caring for Graham. We still need more good nurses for nights and other days and the nursing agency is having difficult staffing us. This is a prayer point for us. To have competent compassionate nurses to care for Graham and all of his medical needs.<br />
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<b>Books</b><br />
Graham's biggest interest right now is books. He has learned to sign "books" and is constantly asking for "more books." He loves to sort them, stack them, read them, and point to them for us to name them. He flips through the books and points out similar animals or objects in different books. He has several books in the same series and he can find each one pictured on the back of the other books. He is one smart cookie if you ask me.<br />
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<b>Moving</b><br />
We are planning to close on our new house on July 20 and move on July 25. We are so excited! We can't wait to be in a one-story house. We are starting the packing now.<br />
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<b>Twins</b><br />
Ben and Hallie are 8 months old and they are sitting up on their own. They are rolling and pushing themselves backwards. It's only a matter of time before they are crawling. They are babbling and within days of each other Hallie starting saying "mama" and Ben started saying "dada." It is so sweet to hear them. Maybe it will rub off on big brother one day. Graham enjoys being around the twins. It is such a joy to see them altogether!<br />
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<tr><td class="tr-caption" style="text-align: center;">Graham's stick. The only thing he could put in his mouth until recently! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">ALL day long.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My babies sitting up!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Riding the train at the mall!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Finally got some pictures showing all of Graham's "hardware." (and his beautiful smile!)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">EATING!!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All my babies eating together! (And our favorite nurse, Amy, in the background.)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">No ventilator!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">New House! Can't wait to move.</td></tr>
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-61243863544046243582015-06-08T10:30:00.001-07:002015-06-08T10:30:10.002-07:00Life at HomeWell Graham has been home a whole month! We are exhausted, busy, and stressed. But we are home, all together, and we are soaking up every minute of it.<br />
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Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.<br />
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He is tolerating his feeds well (no vomiting or pain) so we have increased calories. He is now on Liquid Hope + avocado + coconut oil. We have weaned him off several meds and are hoping to come off more meds soon. He was on several meds for issues relating to his feeding difficulties but all that has been resolved since getting on Liquid Hope. But the doctors don't like to make too many changes at one time, so we are trying to be patient.<br />
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The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.<br />
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Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.<br />
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Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!<br />
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In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.<br />
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That's most of the news lately. Here are some pics:</div>
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<tr><td class="tr-caption" style="text-align: center;">Not sure how Ben got Hallie's sock in his mouth!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">They love their daddy!<br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mother's Day</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First time painting. He like it!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Whale rocker at the neighborhood park.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">New swing! He LOVES it.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Graham wanted to get in the baby exersaucer. Ha!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Toddler story time at the library.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">On the carousel at Pullen Park.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">They let us ride twice in a row without having to get off.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And we rode the train! So thankful for handicap accessibility.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First time in the swing. </td></tr>
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com2tag:blogger.com,1999:blog-1353721282674543487.post-74298028672198765532015-05-09T08:16:00.003-07:002015-05-09T08:16:54.475-07:00Home sweet Home<div>
<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Graham came home from the hospital on April 28, 6 months from his first admission last October. We are so thrilled and give God all the glory. This is such an answer to countless prayers! Graham came home in an ambulance to ensure a safe and uneventful trip. When we arrived our house was buzzing with nurses from the nursing agency, people from the DME (durable medical equipment, supplier of all medical equipment and supplies), and my parents and the twins.</span></div>
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We have 24/7 nursing for the first four weeks and then probably around 18hrs/day after that. This is a huge help. Matt and I are knowledgeable and capable of caring for Graham but he requires so much care that we need help in order to get everything done and eat and sleep and peek at the babies. The nurses measuring out all of his medicines is a blessing alone. Graham has been accepted into the CAP/C program which gives him Medicaid as a secondary insurance based on his medical needs and Medicaid covers the nursing! The idea of the CAP/C program is to provide support to families to care for a medically fragile child at home who otherwise would have to be institutionalized. So thank you tax paying friends for allowing us to function at home as a family!<br />
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Things have been ridiculously busy. We are trying to figure out daily routines and find a place to put all the equipment and supplies. We have a lot of different nurses to cover all the hours right now and so we are constantly orienting them and gauging their competencies. Eventually we will have more regular nurses who will be familiar with Graham and his care and that will allow Matt and I to relinquish a little more responsibility. Our parents are still helping out quite a bit and we still have the part-time nanny for the twins.<br />
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Graham is so happy to be home! His energy level and physical stamina have gone through the roof since coming home. He is pulling up and standing and attempting to walk. We are constantly untangling his lines and following him with the ventilator. We are going to be in trouble once he is walking again. He is enjoying interacting with the twins.<br />
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Thank you for all your prayers over the last several months! Please keep praying for Graham's health and recovery.<br />
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<tr><td class="tr-caption" style="text-align: center;">Graham's ride home. The last time he was in there he was on the way to Duke on ECMO. <br />Much more joyous occasion today!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He's home!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Enjoying toys he hasn't seen in a while.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First time in a bath tub since February! He loved it.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All our babies in one place!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbkzhq-zBFnDK4YvOz9hbRfQyTs8jJl7PWjYw6PV4I-c6GSUn8r1-v3QzatF57YdaeM5NSiFDGk65CZz_YK_AJ3AmmoYsUX2m99ZEuz8s1RL_BMU4eB18Pse5RpFFJEgvURmuC-QcG1lY/s640/blogger-image-1138304508.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbkzhq-zBFnDK4YvOz9hbRfQyTs8jJl7PWjYw6PV4I-c6GSUn8r1-v3QzatF57YdaeM5NSiFDGk65CZz_YK_AJ3AmmoYsUX2m99ZEuz8s1RL_BMU4eB18Pse5RpFFJEgvURmuC-QcG1lY/s320/blogger-image-1138304508.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First ever family walk! One double stroller for the twins and one for Graham and his gear.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSOeH-65UfRO8AiazRRFHxXo0oRMRgtzkZUy-_pkHJUTTog99hyfEaPj3xFaQiYEFyNDsV4nVNvo54whmH2JXljbOFPR5_pgL4C5minvajvVOPU4_KFzozqYOvj7_0hf3OO8UhI-thAv4/s640/blogger-image--358756075.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSOeH-65UfRO8AiazRRFHxXo0oRMRgtzkZUy-_pkHJUTTog99hyfEaPj3xFaQiYEFyNDsV4nVNvo54whmH2JXljbOFPR5_pgL4C5minvajvVOPU4_KFzozqYOvj7_0hf3OO8UhI-thAv4/s320/blogger-image--358756075.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I see you!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQS_Jn2kMfLxVhBtFmRfCs3qF3XeydaXeLMPUqN7HDTtgtjOxZvBvU_c9Jq2VCAIPUwJVmuBgSSvM2dFl-e90oYQJbpt3gbDAtbusE2ue4ueElwRSC-cevHXgprTFUweGltfut6WWrwHk/s640/blogger-image--1438368591.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQS_Jn2kMfLxVhBtFmRfCs3qF3XeydaXeLMPUqN7HDTtgtjOxZvBvU_c9Jq2VCAIPUwJVmuBgSSvM2dFl-e90oYQJbpt3gbDAtbusE2ue4ueElwRSC-cevHXgprTFUweGltfut6WWrwHk/s320/blogger-image--1438368591.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is how he rolls. </td></tr>
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Stroller info in case its relevant to you:<br />
Its a Graco Ready2Grow which is similar to the Sit and Stand but I thought it seemed sturdier. We hang the ventilator on the handlebars. The suction machine sits on the bench seat. The pulse ox and "go bag" are in the basket. We had to move the oxygen to the back step because it was too heavy for the basket. The feeding pump attached to the stroller bag and the feeding bag hangs on a stroller hook. That's about it.</div>
Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com3tag:blogger.com,1999:blog-1353721282674543487.post-42863506834284617642015-04-22T10:04:00.004-07:002015-04-22T10:05:25.005-07:00So close<div>
Life has been so busy since I last posted. (If you make it to the end there are pictures!) Graham is FINALLY out of the ICU and hopefully going home next week! (We have been in the hospital since January 13, the tracheostomy was February 5, and he got of the ICU on April 11.) When I last posted Graham had suffered an injury to his trachea from the custom long trach and he was sedated and on the oscillator. After 4 days he was put back on the regular ventilator and back to the shorter trach. Since then he has had many more ups and downs. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"></span><br />
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Graham had difficulty tolerating feeds (vomiting) and so the doctors insisted on trying to feed him in his jejunum (intestines) and bypassing his stomach. This involved 3 trips to radiology to try and place the j tube and it kept pulling back into his stomach. Apparently Graham's anatomy is not conducive with j tubes. We were actually kind of glad that the j tube didn't work because we believe Graham can tolerate food in his stomach if it is the right food. </div>
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I have heard from countless families in my online communities that their children did not tolerate commercial formulas and did much better on real blended food. I have been around and around with doctors in every department at Duke hospital and they do not allow parents to blend food and give it through the gtube while in the hospital. (nor will they blend food for tubies.) The arguments are that they cannot ensure the food is not spoiled and that they cannot track the calories as easily. So they trust parents to change trachs but not to feed their children safe food. Ugh. </div>
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Well my next move was to push for a product called Liquid Hope. It is an FDA approved tube feeding whole foods formula. After asking and pushing for weeks it was finally approved. We have to order it ourselves but they are allowing it!! This a huge answer to prayer. Graham has been on Liquid Hope since last Friday and the vomiting has stopped, he feels better, he is playing with toys (didn't touch toys for weeks), and the reflux is better. It is truly amazing. It is unreal the number of tube fed children whose vomiting and reflux are treated with medicine and surgery instead of change in diet to real foods. Who would have thunk that his body would tolerate real food better than artificial nutrition?!? (duh) This is something that the medical community needs to get on board with and I may just have to help facilitate that... Once Graham is home I may transition to blending his food ourselves or we may stick with Liquid Hope for a while (especially if insurance covers it). Blending food ourselves is a big responsibility because we have to ensure he gets enough calories in the right volume and all other necessary nutrients.</div>
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When we were advocating for real food for Graham in the ICU the doctors suggested allowing Graham to start eating orally again because that was the only way they could get real food in him according to policy. Great! So the speech therapist came and offered Graham something to eat and drink for the first time since early January. Then she decided that Graham has too high of a risk for aspiration due to his ventilator settings to move forward with feeding therapy. They are unwilling to even do a swallow study to show whether or not Graham is aspirating. Well offering the food and drink awakened a monster and Graham begged and begged and threw tantrums for something to put in his mouth. Can you blame him? The docs finally allowed small amounts of water on a sponge. I could have strangled that therapist for offering Graham something when she had no intentions of moving forward with eating/drinking. Well the feeding therapist refuses to even work with Graham until he is on lower ventilator settings and tolerating a speaking valve but the pulmanologist refuses to do any respiratory weans because they just want to keep him stable and get him out of the hospital.Graham not eating orally has been very difficult for Matt and I because one of the reasons we decided to do the trach was because we were told he would be able to eat with the trach and he couldn't with the bipap mask. Not eating and drinking in front of Graham will be difficult once he is home and as the twins get older. We hope that Graham's respiratory status will improve quickly and that our speech therapist outside the hospital will have a different perspective.</div>
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About a week after the speech therapist incident Graham became violently out of control. We couldn't tell if he was delirious or in pain or both. He would thrash and bite and pull at the trach and kick and cry for hours. This was a miserable time for all of us and very frustrating because the doctors couldn't find / wouldn't look for answers. Slowly things improved with new medicines and getting out of the ICU.</div>
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A few days after moving to the "Step Down" unit Graham's hemoglobin dropped enough that he had to get a blood transfusion. When the hemoglobin drops one of three things could be happening: he isn't producing enough red blood cells, his body is destroying red blood cells, or he is bleeding. They ran blood work and did a CT scan of his brain. The scan showed some bleeding on his brain. Not enough to have to do anything about it and not enough to totally explain the drop in his hemoglobin. The bleed is most likely from the blood thinner shots that Graham got twice a day for 6 weeks to treat an old clot in his leg. Ugh. We had protested the blood thinner because we knew it was an old clot and felt treatment wasn't necessary. The clot is still there and now he has blood on the brain. This could have been the source of his misery when he was so violent but we don't know for sure.</div>
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The doctors are continuing to closely track Graham's hemoglobin. They haven't exactly decided if it was an acute issue from being sick and having lots of labs drawn or if Graham has another more serious blood issue. This is one of the things that has to resolve before he can go home.</div>
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Graham has continued to fight with the Pseudomonas infection. Since his first hospitalization in October he goes on antibiotics for 7-10 days and then two days later his secretions get thicker and he requires more suctioning and then he gets a fever and then they draw samples (blood, urine, sputum) and determine its the Pseudomonas and put him back on antibiotics. He will probably battle with this infection until he doesn't have the trach anymore and we just have to try and keep it at bay. They have finally changed treatment plan and put him on an inhaled antibiotic which he will possibly be on long term. On for 30 days and off for 30 days. We will pray that the Lord will just take away this infection!</div>
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Since Graham has battled with infection and fevers the doctors called in the Immunologist. She ran tests and has diagnosed Graham with partial DiGeorge syndrome. This syndrome is also known as 22q11 Deletion but Graham isn't actually missing this chromosome. He meets the other criteria for the syndrome: heart defect and low T cell count. People with this syndrome would normally not fight infection well and shouldn't get live vaccines. Well Graham has not been a sickly child and did fine with all his vaccinations. So we are a little underwhelmed by this diagnosis but its something to keep an eye on.</div>
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The last week has been very busy as Matt and I make preparations for Graham coming home. We have to do lots of training for Graham's care and equipment. We have been approved by CAP/C which qualifies us for Medicaid as a secondary insurance which covers nursing care at home. We are lining up nursing care and supplies and making doctor's appointments and rearranging our house to accommodate Graham and all his medical equipment and supplies.</div>
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We are so thankful for all the prayers and support. Please keep praying that things hold course and we get home next week and stay home for a while. To God be the Glory.<br />
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There has been more misery than smiles unfortunately. But here are a few captured smiles! And they are increasing in frequency every day now that things are looking up! These are in reverse order cuz it happened that way and I'm too time crunched to change it. </div>
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<tr><td class="tr-caption" style="text-align: center;">Hospital Entertainment.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Insurance pays for the wipes.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hey. If it gets a smile...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A boy and his cars.</td></tr>
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<tr><td style="text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIDu6NkfnTG1P-iLn1dMJvbHRJj6fQ1iHX98w_0xGADiBX0K56HQv6_PGjm6Fvb8qeCutr3Hym3o1zqoNsB7FgbwPXELWP3bJUA1FGnQlyFOD3M01XYbTTuYkjP10wAMLZhPy156qf9Us/s320/blogger-image--316846513.jpg" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wearing green for our friend Eli who got a bone marrow transplant last week at Duke.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">New favorite toy. Loves sticking his finger in his nose and in these balls.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bath after a poop explosion. (suppository)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bubbles for the win.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The trach doubles as a head rest. When he's too sedated to stay awake and too stubborn to lay down.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjUm_MZAm7R3iKjshlClwCl6wtYIRfRlq0FRXMnewixsVgVRWxB9RPxT0jJEsHWKLLTZ31e4pzYomugHrOZ_3USTG64V1c5xGbB4DPLHvcGc0tX2vgJ3CHEUFXQVlhE_SQqXUDgToT9A/s640/blogger-image-498453041.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjUm_MZAm7R3iKjshlClwCl6wtYIRfRlq0FRXMnewixsVgVRWxB9RPxT0jJEsHWKLLTZ31e4pzYomugHrOZ_3USTG64V1c5xGbB4DPLHvcGc0tX2vgJ3CHEUFXQVlhE_SQqXUDgToT9A/s320/blogger-image-498453041.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting a shampoo after an EEG left sticky goo in his hair.</td></tr>
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Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-10070917753745545992015-03-15T11:56:00.001-07:002015-03-18T15:28:09.453-07:001 step forward and 2 steps backI know I got the cliche backwards but that's what it's been like for our little guy. Graham's custom trach arrived Friday a week ago and it was put in on Saturday. His breathing improved with the longer trach and we were all set to finally move out of the ICU on Wednesday. But Graham had another episode of high heart rate and low oxygenation. And then on Thursday everything hit the fan. Graham started declining and with a room full of doctors they could not properly ventilate Graham. His oxygenation, which is usually in the 90s, was dropping as low as the 30s.<br />
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They called ENT to come scope him and at first they thought there was still some collapse of his trachea below the trach and they removed the trach and put in a tube that they could put in deeper but it didn't help. Eventually the attending ent doctor got out of surgery and came up and decided that there was some injury to the back wall of the trachea and a piece of tissue had been dislodged and it was blocking the airway. So they put in his shorter trach to not irritate the injured area and allow it to heal. The injury could be from trach changes or just wear over time from where the trach sits. Ent will evaluate again once he is better to find a proper fitting trach. They had to fully sedate and paralyze Graham and put him on a different kind of ventilator called an oscillator. This machine gives 480 tiny breaths a minute and so Graham's little body is vibrating. </div>
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They had much difficult getting in additional access lines after all the craziness. Graham has been stuck so many times that he has no good veins or arteries. It took attending doctors hours to finally get in a central line (for meds) and arterial line (for blood pressure monitoring and drawing blood for labs). Graham had a PICC line but this is a tiny line and meds can't be given quickly enough in emergency situations. We praise God that they finally got the access lines. Graham looks like a pin cushions from dozens of sticks. </div>
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Graham also developed a fever again. It is most likely the same infection he has been fighting for months rearing it's ugly little head again. He is back on antibiotics today and the fever is down. They have been to come down on the oscillator settings and down on the oxygen some over the weekend which is good. They worry about damaging the lungs when he stays on such high support. His left lung is expanding more than his right and we aren't quite sure why. </div>
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It has been a long few days. We are very discouraged. We long for Graham to get out of the ICU and to get home. We have had many people praying for us and encouraging us. We continue to wait on The Lord to heal Graham. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiORuZAHP1Jbk25dQgJkFsSBQADt3GF1qhGgabFq3Shj9oDmHzB3TSDAMf_JlDjUoYtGPLxUvZTdiLSlV1OvHdY5sVKES_huVS8PxQbHaP-TPUkB1acPTWJM6PK23wKcon1aIrNtGyTYbk/s640/blogger-image--2084666439.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiORuZAHP1Jbk25dQgJkFsSBQADt3GF1qhGgabFq3Shj9oDmHzB3TSDAMf_JlDjUoYtGPLxUvZTdiLSlV1OvHdY5sVKES_huVS8PxQbHaP-TPUkB1acPTWJM6PK23wKcon1aIrNtGyTYbk/s320/blogger-image--2084666439.jpg" width="240" /></a></div>
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Our nurse snagged us a Mr. Potato Head quilt and a dog stuffie (you know from the infomercials)! G loves Mr. Potato Head. (All donated to hospital.)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcmO-bdMuuyFsaXOlGAshvgxmh5bBMoxfgVXMhoI1JgRRMESlV9WoVU8qMvDC3REW_HbHIw6RGizwbplrMkPuTlazOXvW8IKkIT2JDyP7VKu0GfSkOOMMCW3Ds7FQo5_jL73x8ln2DVw/s640/blogger-image--1685302324.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcmO-bdMuuyFsaXOlGAshvgxmh5bBMoxfgVXMhoI1JgRRMESlV9WoVU8qMvDC3REW_HbHIw6RGizwbplrMkPuTlazOXvW8IKkIT2JDyP7VKu0GfSkOOMMCW3Ds7FQo5_jL73x8ln2DVw/s320/blogger-image--1685302324.jpg" width="320" /></a></div>
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That machine to the right is the oscillator. Looks so 1970s doesn't it? The machine in the background on standby is the regular ventilator. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhulsWEt51-1oFqsCgDTxajq23Q3PRvzOZ0kHtL6loUQggxFDGRI1W4qRr8gykmBhInoeMfs-qxbbgn9Vo4qmBFZxg8OHYyzlHg0oRFuALJFD1wq5ufc2UY2sL7oebzN3uC9IhUAz1l_ZI/s640/blogger-image--1271793045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhulsWEt51-1oFqsCgDTxajq23Q3PRvzOZ0kHtL6loUQggxFDGRI1W4qRr8gykmBhInoeMfs-qxbbgn9Vo4qmBFZxg8OHYyzlHg0oRFuALJFD1wq5ufc2UY2sL7oebzN3uC9IhUAz1l_ZI/s320/blogger-image--1271793045.jpg" width="240" /></a></div>
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This organization made all the kids capes today! Very sweet ( although not sure he will be able to wear it with the trach.)</div>
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So thankful for all the programs and organizations that seek to improve life for kids in the hospital. </div>
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Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-54565654024288524092015-03-04T14:53:00.000-08:002015-03-04T14:53:21.473-08:00Update on GrahamGraham had surgery to place a tracheostomy, breathing tube in his neck, on February 5. The surgery itself went well but the recovery has been rocky. Graham is still in the ICU four weeks later. Graham has battled with a Pseudomonas infection since last November when he first went into the hospital. Now that he has plastic in his neck, infection will be a frequent if not constant battle. Graham continues to have coughing and vomiting fits. We are not sure why he is coughing. It could be the infection that comes and goes. It could be irritation from the trach. We are not sure why he is vomiting. It could be all the coughing or it could be a GI issue.<br />
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We are thankful that Graham is tolerating the trach and not grabbing at it or pulling it out. That is surely the grace of God! It has to be cleaned and the ties around his neck replaced twice a day. He tolerates this sometimes and sometimes looses his mind. Matt and I are learning how to care for the trach and how to change it. We have to change it out a certain number of times before going home. Unfortunately the trach keeps coming out accidentally (when G coughs a lot or rolls suddenly) and has to be replaced emergently by the respiratory therapist so we haven't had a chance to do it much ourselves yet. It can only be changed every few days because we don't want to irritate the stoma (hole in neck) or the trachea too much.<br />
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The right side of Graham's heart is getting larger because it is working too hard. We know that Graham's heart is still not in great shape but we had been told that his heart condition is not contributing to his respiratory difficulties and that he shouldn't need any further heart surgery until he is a young adult. Well... due to Graham's slow recovery, increased need for high respiratory support, and the enlarging of the right side of the heart, the cardiologists have been wanting to do a heart catheterization to get a good look at his heart. We had been putting them off because it didn't seem urgent and we wanted to let Graham get stronger first. Last week Graham had a random episode of serious respiratory and cardiac distress that called in all the doctors in the middle of the night. So on Monday they went forward with the catheterization.<br />
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He was in the procedure room for about 7 hours. The pulmonary arteries going from the heart to the lungs are narrow and they decided to place a stint in the left pulmonary artery. The stint didn't stay in place and they spent hours trying to move it back into place. They ended up stabilizing the stint in another location so it wouldn't have to be removed with open heart surgery but it isn't doing him any good where it is. Nothing is ever straight forward with this kid. Sigh.<br />
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Today ENT scoped Graham (put a camera down his trach) to measure his trachea. We have been waiting on them for a WEEK. They think that he could benefit from a longer trach to stint open more of his trachea to allow air to pass. This requires a custom order trach that will take anywhere from a few days to a month to get. We pray it comes quickly and that it will work well for Graham.<br />
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We continue to pray for God to heal Graham at least enough so that we can go home. We continue to be blessed by family, friends, and even strangers as we walk this valley. Thank you for your prayers and support!<br />
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<tr><td class="tr-caption" style="text-align: center;">A few days after surgery.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A couple weeks after surgery. He's into stickers lately. Note stickers on his suction catheter. Oops.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPVAqb7o_C95KE1ab6a07q_ji-A0H6jC7jjQ3yP_TNECO5pjpwIGFWqFJ9cUzxQUWceMuvcRwwDPUFVjcUT09sKN9T782Z2C1nWN0V7rYlFdELLFtAl9R_PMeM_6G7MAvmDjfWrlxbkt0/s640/blogger-image--1966235495.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPVAqb7o_C95KE1ab6a07q_ji-A0H6jC7jjQ3yP_TNECO5pjpwIGFWqFJ9cUzxQUWceMuvcRwwDPUFVjcUT09sKN9T782Z2C1nWN0V7rYlFdELLFtAl9R_PMeM_6G7MAvmDjfWrlxbkt0/s320/blogger-image--1966235495.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggles with mommy, 4 weeks since surgery, 2 days since heart cath.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyh4qAIxprCxbohkUz-1TtzukGNnaWbjiwxh_1CZFxu6YQPG0HXVr0adfWy-ySuFVciCKhBTc2wTlx4gGewm-5uvDW4DWDVIiT-V9e9Vf3cjoQxmlaFmk5NiGjskWvkLxVTi1oF4mogas/s640/blogger-image--362613914.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyh4qAIxprCxbohkUz-1TtzukGNnaWbjiwxh_1CZFxu6YQPG0HXVr0adfWy-ySuFVciCKhBTc2wTlx4gGewm-5uvDW4DWDVIiT-V9e9Vf3cjoQxmlaFmk5NiGjskWvkLxVTi1oF4mogas/s320/blogger-image--362613914.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His nurse went and got him some snow! (She might be our favorite.)</td></tr>
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-22350360633149287912015-03-04T12:01:00.001-08:002015-03-04T12:01:19.350-08:00Missions & Ministry?<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;">Matt and I made it church with the twins last week. The first time for the twins and only the 2nd time for me since August. It happened to be missions festival Sunday. Matt and I obviously aren't going to pack up our family and move overseas for missions any time soon. We aren't even going to leave the triangle until Graham is grown or miraculously healed. We don't have time to lead Bible study or be involved in any church programs. So what is our place in missions right now and for the foreseeable</span></span></span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;"> future? How can our family with so little time and energy make much of Christ? We don't know exactly but we are asking God that and praying for him to show us and for us to be willing participants and not just be totally absorbed in our own lives. Although it is very difficult to think of anything besides the needs of our family right now we know others around us need Jesus. Will you pray with us that the Lord would use us and that we would take opportunities that he gives us?</span><br />
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Here is one cool story that happened recently as I've been trying to keep my head up enough to see opportunities to meet and encourage people in the hospital. I was eating lunch in the cafeteria and I was ignoring Gods prompting to talk to an older lady at my table. Then I spilled my soup all over myself and on my way to get napkins I told God that I was definitely not in the mood for chatting now. When I returned to the table the lady started talking to me. When she heard my story she opened her purse and gave me $20, saying that instead of putting flowers on her husbands grave she gives that money to people who need it. God said I'll see your stubbornness and raise you a blessing. Boom.</span>Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-72477486434263064322015-03-04T11:34:00.000-08:002015-03-04T11:34:05.438-08:00Twins Birth StoryLet's see if I can remember that far back... I was hospitalized for pre-term labor at 31 weeks and came home on bed rest. I had consistent contractions on and off for 6 weeks but my cervix held those babies in! At about 35 weeks I started itching like crazy all over. It was miserable. I was already pretty miserable with pelvic pain, not able to stand or even sit up straight for more than a few minutes at a time. And now with the itching, I was sleeping only a couple of hours a night. So I went to see the OB and they confirmed I had cholestasis and they scheduled me for an induction on Tuesday, October 21. Everyone was pleased and surprised that I made it to 37 weeks!<br />
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Early Tuesday morning (the day I was scheduled for an induction) my water broke. My water broke with Graham while on the toilet and I felt a gush. But this time, I literally felt a pop in my belly and knew it was a much different feeling than anything I had felt before. I was laying on the couch, not sleeping, and decided to sit up and see if I felt anything. Somebody had folded towels the day before and left them piled on the coffee table. This was divine because as soon as I started to sit up I had to grab a towel to catch the gushing! I called the OB and then went to wake Matt. When I told him my water broke he said, "of course it did." I was so relieved that labor had started on its on instead of having to be induced.<br />
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We stopped by Bojangles at 5;30am and got some breakfast, knowing that once I was at the hospital they wouldn't let me eat. When we got to the hospital the triage nurse was having a difficult time finding the babies' heart beats with the monitors based on where I told her they had been previously. The doctor brought in the ultrasound machine to find the babies and Hallie had flipped upside down in the last week. Ben was first to come out and he was still head down so we planned to proceed with a vaginal delivery. My labor was progressing quickly and the nurse was moving too slowly. I was like look, the babies are fine. Stop chasing them with the monitors and get my IV in to start my antibiotic (for strep B) and get me moved to a labor room for my epidural. I did not have an epidural with Graham but I had been convinced it was a good idea to get one with the twins in case something went wrong during delivery and I needed a c-section. If I was going to get one then I wanted to go ahead and get it!<br />
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By the time they came with that epidural I was 7 cm dilated and hurting bad. They immediately took me to the OR for delivery after the epidural was placed. They like for multiple births to take place in the OR just in case something goes wrong and a c-section is needed.<br />
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They had me get on the narrow, hard, flat operating table. I was so thankful I opted for the epidural because I don't think I could have laid flat on that little table and birthed 2 babies. I birthed Graham with no epidural but I got to be in the nice birthing bed and get in whatever position I wanted. The OR was freezing and I was shaking uncontrollably from the cold and the stress. By the time they wanted me to push, I couldn't feel anything. They said I was doing a great job pushing so I just kept doing what I was doing. Ben came out with no problems and then the OB brought the ultrasound over and turned Hallie. She had one hand pushing on my belly and the other hand inside me! Again, thankful for the epidural. She got her turned and we waited a few contractions to move her down and 3 pushes and she was out, 15 minutes after her brother. A few minutes later Matt was holding a baby and I was holding a baby. Two healthy babies! Delivered vaginally! Thank you, Lord.<br />
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Ben was born at 9:11am and was 6lbs 9oz and 20.5 inches. Hallie was born at 9:26am 6lbs 3 oz and 19 inches. And what a blessing they have been! If Matt and I had known what would be going on with Graham these last few months we would have certainly waited much longer to consider having more children. But the Lord in his infinite wisdom blessed us with two sweet babies to snuggle and bring joy during an otherwise very difficult time.<br />
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And now some newborn photos! The sweet photographer has offered to come take pictures of all three kiddos once Graham is home from the hospital at no additional charge!<br />
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-24730827997508960512015-02-07T18:30:00.000-08:002015-02-14T13:05:39.660-08:00BOGO Surgery Too bad Duke didn't have a Buy One Get One Free sale on surgery this week! Graham had surgery for his tracheostomy on Thursday and I (Liz) had my gall bladder removed on Friday.<br />
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It started with a stomach ache Tuesday afternoon, then an intense upper abdomen pain, then an intense middle back pain. I was with Graham at the hospital and by the time Matt got there after work I was barely able to stand. He wheeled me down to the ER in a wheel chair and then went back to be with Graham. The pain lasted a few hours and then let up. The doctors say I must have passed a gall stone and did they did an ultrasound of my abdomen and said my gall bladder was full of stones. My blood work showed that I had pancreatitis. Passing the stone made my pancreas very angry. They wanted to admit me until my pancreas calmed down and then remove the gall bladder. Well Thursday morning my pancreas was completely recovered and the surgeon said it was the quickest recovery from pancreatitis that he has ever seen. I told him my family had a lot of people praying for us. They wanted to do surgery on Thursday but I convinced them to wait until Friday since my son was having surgery that day. I spent all of Thursday with Graham and family, wandering the hospital with an IV in my arm.</div>
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Graham's surgery went well. He is still pretty sedated because they want him to be still and calm until the site heals. He may have gotten an infection of some sort because he is snotty and having some breathing difficulty and has a fever. We are hoping that this trach will be a good thing for Graham but right now its hard because he went from a smiling boy playing with toys to sedated and swollen with bloody bandages on his neck. </div>
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My surgery went well too. But I underestimated the pain and recovery. Just because a surgery is "routine" and "outpatient" doesn't mean its not a beast. I am hoping the pain will subside soon so I can get back to caring for Graham and the babies but right now I am taking plenty of oxycodone and snuggling with the heating pad. I was discharged late Friday night and got to see my babies Saturday morning for the first time since Tuesday morning.</div>
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Both sets of grandparents are in town for the weekend. Thank goodness. We continue to pray for God's nearness and strength and healing.</div>
Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-71882419395657192772015-01-20T11:02:00.000-08:002015-03-24T11:04:10.973-07:00Update on life<div class="separator" style="clear: both;">
<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">So I keep thinking that I will have time to go back and write about all that has happened in the last few months but things continue to be crazy for us and so I have decided to give a brief update and then continue on with current news. </span></div>
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Graham stayed in the hospital until December 29. We had thought we would be home by Christmas but we didn't make it. Some dear sweet friends decorated our house for Christmas and we celebrated when we came home. This was such a wonderful gift, to come home to a decorated house, tree and everything. I am so blessed to have friends sweet enough to go in my attic and buy us a real tree!<br />
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Graham got a G-tube (feeding tube in his stomach) while in the hospital so that we can get enough nutrition in him for him to start growing. He burns so many calories with his work of breathing that he hasn't been growing well. He came home using a BiPap machine at night (breathing support with nasal mask), a pulse ox machine (sticker on his toe to monitor oxygen saturation) and a feeding pump. He did great at home for about 5 days and then started to have more labored breathing. He was on BiPap most of the day and we decided he needed to see the pulmanologist again. On our way to Duke we had to pull over on 540 and call EMS because Graham wasn't breathing well and was turning blue. SCARY. We got a ride to Duke and have been here since (about 2.5 weeks).</div>
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Graham has had a scope by ENT to see his airway and he has severe tracheobronchomalacia, floppy airways. We are faced with deciding whether to try and make BiPap work again or getting a tracheostomy and ventilator. This is a very difficult decision. The trach is invasive but offers some benefits. Accepting that Graham needs such serious support is difficult. Please pray for us to have wisdom and courage to make the right decision.<br />
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Graham is on BiPap 24/7 right now and not making much progress. He cannot eat or drink orally while on BiPap and he begs for something to put in his mouth. He also cannot go on any wagon rides while hooked to the BiPap. I am spending my days and every other night at the hospital with him. My mom and Matt are filling in evenings and other nights. We have hired a part time nanny for the twins. I am really missing spending time with my babies! </div>
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We praise God that Graham is still here and he has come so far from this picture. </div>
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We pray for the Lord to continue to uphold us and carry us through whatever still lies ahead. </div>
Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-23320440502641007472014-11-15T12:05:00.001-08:002014-11-15T17:53:22.913-08:005 days of bliss and then...Well the twins were born, two days later we came home, and three days later Graham went to the hospital. It has been a crazy 3 weeks but I wanted to finally get something on the blog. Graham started coughing on Friday and by Sunday evening his breathing was concerning enough that Matt and I called 911. Matt went to the hospital with Graham and I stayed home with the twins. Graham ended up being put on a ventilator and admitted to the ICU. By Wednesday the Wake Med doctor wanted to transfer Graham to UNC. While preparing Graham for transport he went into cardiac arrest. After getting him stable again they decided it was too risky to move him unless he was on ECMO (heart/lung machine). It was then decided that Graham would be transferred to Duke because they are one of the few hospitals in the nation that have a portable ECMO. So Duke came to get him and he has been in the PCICU (Pediatric Cardiac Intensive Care Unit) since then. <div><br></div><div>Graham had two respiratory viruses (Rhino and Adno) and apparently has a congenital lung condition called malacia which means he has floppy air ways, plus his less than perfect heart. This has made for a very sick boy. He was on ECMO for 4 days and is still on the ventilator. He made some progress and 3 days ago they tried to take him off the ventilator but he wasn't able to breathe well enough on his own. He has taken several steps backwards since then. </div><div><br></div><div>The twins and I (Liz) and my mom have been staying in a hotel near the hospital. Matt has been getting rides home in the evening then going to work and getting rides to the hospital after work. </div><div><br></div><div>We continue to pray that God will heal Graham quickly and completely and that He will sustain our family during this time. We have been humbled and overwhelmed by the love and support we have received from friends, family, and church family. We are so grateful for all the gifts, visits, encouragement, and prayers. </div><div><br></div><div><br></div>Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0tag:blogger.com,1999:blog-1353721282674543487.post-16450724087892510532014-10-25T15:43:00.000-07:002014-10-25T15:43:57.408-07:00They're Here!The twins were born Tuesday morning, October 21 at 37 weeks and 1 day. Benjamin Caldwell weighed 6lbs 9oz and Hallie Margaret weighed 6lbs 3oz. We are so thrilled to finally meet them! The labor and delivery went swiftly and smoothly as we had prayed. I will blog details on that later. They are both healthy and came home with us 2 days after birth.<br />
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As I sat in the wheel chair holding one baby in each arm waiting to leave the hospital it all finally hit me. I sat there tearing up, trying not to bawl in front of everybody congratulating me. We are so so blessed. From the day we found out that we were having twins anxiety set in. Worries about a difficult pregnancy, about carrying them long enough, about NICU stays and health issues, about delivery and risk of c-section, about all the stuff we needed to buy, and on and on. Many many prayers have been prayed over these babies. At 31 weeks I was hospitalized for preterm labor and went on bed rest until the birth. But now they are here and all that is behind us. They made it to 37 weeks and delivery went well and they are healthy. There I was holding these two perfect babies and for the first time I felt like I could really enjoy the blessing that they are. I am so thankful to the Lord for providing and answering all our prayers! I could not be happier!!<br />
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-66230575138139102172014-09-23T12:19:00.000-07:002014-09-23T12:19:36.884-07:00Doctors, Doctors, and more DoctorsBetween the three of us we have at least 2 doctors appointments a week, plus Graham's three therapy sessions. Can I just say that I am sooo thankful for health insurance?! Last week Graham saw the neurosurgeon for a check-up and had a modified barium swallow study. This week he saw the neurologist and the ophthalmologist.<br />
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Matt and my mom took Graham to the neurosurgeon and for the swallow study. Too much walking for me to go to Duke for the neurosurgeon and the swallow study was basically dying Graham's food and watching him eat on x-ray which I couldn't be present for since I am pregnant. Mom drove and Matt and Graham met with the doctors.<br />
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<b>Neurosurgeon:</b><br />
There weren't any concerns from the neurosurgeon. She wants another MRI in March to make sure that everything is still working properly in Graham's neck. She mentioned that she wasn't surprised that Graham was in feeding therapy because children with stenosis in the neck often need that. Well, thanks for the heads up on that, lady! Apparently most of Graham's lingering issues (physical development delays, speech delays, eating issues) all stem from the stenosis in his neck. Too bad the pediatrician didn't know that when he made me feel like a terrible mom because I haven't overcome Graham's behavioral issues and forced him to eat table foods.<br />
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<b>Feeding Specialist:</b><br />
Graham saw the feeding specialist on Friday to get the results from the swallow study. My prayer was that there wouldn't be any physical abnormalities that would require surgery and that Graham would be agreeable for the appointment. Well those prayers were answered but we got some news I was not prepared for. Apparently when Graham tips his head back to drink from his sippy cup he just lets the milk run down his throat instead of gathering it in his mouth and then swallowing. This puts him at risk for aspiration. So we are supposed to thicken his fluids and start working to transition him to an open cup which will promote a better swallow technique. A 2 year old with an open cup... my entire house is going to smell like sour milk.<br />
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But <b>the big doozy is that she wants him to go back to an all pureed food diet.</b> Graham is not chewing correctly. He still tries to mash food with his tongue against the top of his mouth like a baby, even though he has all of his teeth. So he is swallowing large chunks of food which puts him at risk of choking and also doesn't allow his body to fully digest his food and get all the nutrition from his food. So at age 2, Graham is eating only pureed foods. This is both for safety reasons and so that we can start from scratch to reteach him how to chew and swallow foods. We started on Friday and it has been a battle figuring out how to puree foods and how to get Graham to eat it. Crying, lots of crying, and little eating. So far pureed mac and cheese and chocolate pudding are the only sure wins. Graham will go to feeding therapy once a week.<br />
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I may have shed a few tears when I heard that Graham had to go back to pureed foods. He is a very picky eater and most of his favorite foods are solid crunchy foods. We get him interested in food by letting him take a bit of a big piece or eat with a fork. What about trying to get him to eat what we eat. I can no longer offer him food from my plate. I'm on bed rest, and now somebody has to puree all of his meals. I guess nobody in this house gets to eat crackers or chips anymore. How can we eat them when he can't have them? Graham is not growing and I am desperate for him to eat and this is not going to be easy. Please pray that Graham will eat and that we will have wisdom and patience with him.<br />
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<b>Neurologist:</b><br />
We took Graham to the neurologist 6 weeks ago to see if she would have any answers about his nystagmus (bouncy eyes) or eating issues. She wanted to see his most recent MRI and scheduled another appointment for yesterday. Guess what... Duke still hadn't sent over his MRI. Sigh. But this time she mentioned some concerns that she didn't mention last time. She noticed something about his back and wants to do an x-ray to see his spine better because she thinks he may have scoliosis. She also pointed out that the top part of his arms is shorter than the bottom and that he could have some kind of condition that prevents him from growing, not just his lack of eating. She wants him to see Duke genetics but they are booked up through September of next year. She wants to see if he has any kind of chromosomal/genetic issue/syndrome that ties together all of his health issues. She says that if he does have something that can be identified then it would give us a heads up on other health issues he may face going forward. So we have to take Graham for a back x-ray and to have blood taken for some kind of brand band genetics testing.<br />
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<b>Ophthalmologist:</b><br />
Graham continues to see the eye doctor every 6 months. She doesn't have any answers for the nystagmus but wants to continue to monitor his eye sight and eye health since he has the nystagmus. She didn't have any concerns today! Praise the Lord.<br />
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<b>Conclusion:</b><br />
Our family obviously has a lot going on and the stress level is through the roof. I know that there are many people with children with much more serious health issues or handicaps but in a lot of cases those families know from day one that their child will never live the normal life they had dreamed of. With Graham, I am still holding on to the possibility that he will live a fairly normal life and with each doctors appointment and diagnosis I feel that slowly slipping away and that is very difficult.<br />
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We are grateful for the support and help from family and friends. We long for a day when our family is functioning normally and we can again serve others. Our 4 big prayer requests are (1) that Graham will eat and gain weight (2) that the twins will stay in the womb a few more weeks (I am 33 weeks) (3) that Matt's seizures will get under control with medicine so he can drive again (4) that we will seek the Lord and rely on Him for the grace we need during this season. Thank you for your continued prayers. We are so humbled.Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com1tag:blogger.com,1999:blog-1353721282674543487.post-90114491982169419552014-09-17T10:15:00.000-07:002014-09-17T10:15:20.330-07:00Graham's Eating and Development<b>Eating:</b><br />
Graham went to the pediatrician in July for an asthma follow-up. The doctor is satisfied with his breathing but was concerned about his weight. Graham had only gained half a pound since January. Finally, somebody besides me is concerned that he isn't gaining weight. The pediatrician wants us to offer Graham what we eat at each meal and if he doesn't eat, then he will be hungry enough to eat at the next meal. FALSE. Graham is a picky eater but he is also often not interested in eating even when we give him his favorite foods. Graham also likes to drink water all day long and the doctor said to stop letting him do that because water has no calories and he is filling up on water and then not hungry for food. So we are trying to limit his fluids and only give him milk, not water. Because mommy is drinking water all day to stay hydrated for the pregnancy Graham wants his cup too. This results in milk being dripped all over our living room. Sigh.<br />
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We are offering Graham 2-3 foods that he has eaten before at each meal, plus offering whatever we are eating. Sometimes he eats and sometimes he doesn't. We try letting him bite from a big piece instead of cutting things up for him. We try letting him use a utensil to keep his interest. We are putting butter, cheese, and mayonnaise on everything and buying full fat everything.<br />
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We went back to the pediatrician after 6 weeks and Graham had gained 4 ounces. The pediatrician referred us to a feeding specialist to make sure that nothing is wrong with the mechanics of Graham's eating. Last week Graham had his appointment with the feeding specialist and she identified some immature eating techniques such as mashing food with his tongue against the top of his mouth instead of chewing with his teeth. She suggested Graham start feeding therapy once a week. We started Graham on reflux medicine because we think we can hear his food coming up and watch him swallow it back down. So far it doesn't seem to be helping.<br />
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Matt took Graham for a modified barium swallow test yesterday. Basically they coated his food and milk with barium and watched him eat on x-ray. Thankfully Graham was fairly cooperative for the test. We will get the results on Friday. Graham went for a check-up with the neurosurgeon yesterday and she said that children with stenosis (narrowing) in the neck can have issues with feeding so she was glad he was going to start feeding therapy.<br />
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We are praying that there is no major physical issue and he is just behind in his feeding development and perhaps having some reflux or digestive issues. We are praying that he will start eating better and gaining weight! We won't even have to buy new clothes for this winter b/c he is the same size he was last winter.<br />
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<b>Development:</b><br />
Despite Graham being uncooperative during physical therapy lately, he is continuing to make progress. He can climb the stairs all by himself. He is getting braver and steadier with his walking, taking 8-10 steps between objects. Our prayer and hope was that Graham would be walking by his 2nd birthday (Oct. 2) and by the time the twins were born. It looks like that is a very possible goal! We are so encouraged by his progress during an otherwise difficult time for our family. Thank you, Lord!<br />
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I took this video earlier this week of Graham walking! He is so proud of himself!<br />
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<br />Lizhttp://www.blogger.com/profile/10872038957388584115noreply@blogger.com0