Jesus talks with Graham

Not 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!

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.

For “everyone who calls on the name of the Lord will be saved.” How then will they call on him in whom they have not believed? And how are they to believe in him of whom they have never heard. And how are they to hear without someone preaching? Romans 10:13-14

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.

“You shall therefore lay up these words of mine in your heart and in your soul, and you shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. 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

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!

"Even before there is a word on my tongue, Behold, O LORD, You know it all." Psalm 139:4

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!

Christmas Review

Oh 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.

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.

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.

helping decorate the tree (all fun and games til Ben smashed a glass ball and cut his hand)

Cutest little Santa ever

handprint Christmas tree

handprint reinder antlers

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cooking dinner

feeding Cookie Monster his cookies

gingerbread house - Graham mostly supervised and threw candy on the floor

reading books with daddy

the pantry provides lots of entertainment

Christmas Cookies

Ben's favorite toy for a week - wrapping paper roll

look what Santa brought!

Hallie got a baby doll from each grandmother

Liz's family - brother, Perry

Matt's brother's family - Jason, Joy, Hayes, Titus

Matt's sister's family - Robin, Nathan, Noah, Zachary

Hay ride at Matt's parents' house

all the Laney grandkids

The whole Laney family (a few members are hiding in this pic. oops.)

Home Nursing is a Blessing but It's Not Always Easy

Thanks 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.

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.

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!

October is for Birthdays

Graham 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!

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.

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.

Nom. 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!!

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.)

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!!

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.

Look mom, no vent!
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.

Nurses
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.

Books
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.

Moving
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.

Twins
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!

Graham's stick. The only thing he could put in his mouth until recently! 

ALL day long.

My babies sitting up!

Riding the train at the mall!

Finally got some pictures showing all of Graham's "hardware." (and his beautiful smile!)

EATING!!!

All my babies eating together! (And our favorite nurse, Amy, in the background.)

No ventilator!

New House! Can't wait to move.