Between 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.
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.
Neurosurgeon:
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.
Feeding Specialist:
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.
But the big doozy is that she wants him to go back to an all pureed food diet. 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.
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.
Neurologist:
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.
Ophthalmologist:
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.
Conclusion:
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.
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.
Tuesday, September 23, 2014
Wednesday, September 17, 2014
Graham's Eating and Development
Eating:
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.
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.
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.
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.
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.
Development:
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!
I took this video earlier this week of Graham walking! He is so proud of himself!
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.
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.
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.
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.
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.
Development:
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!
I took this video earlier this week of Graham walking! He is so proud of himself!
Tuesday, September 16, 2014
Matt's Health Update
About a month ago we had put Graham to bed and Matt was in the garage cleaning a gun and I was in the living room watching tv. I heard a funny noise, like a loud groan and then a crash. I went running to the garage and found Matt on the floor convulsing. I put something soft under his head and ran back in the house for the phone to call 911. I was concerned that he might have hit his head on the concrete but I didn't see any blood. He convulsed for several minutes and then passed out. He was just starting to come to when the firemen arrived at the door. Matt was quite disoriented and I was trying to convince him not to try and get up. I had to contain the dog and let the firemen in. Then Matt threw up. Eventually they got him up and in the house. He was still quite disoriented as they took him out to the ambulance, not answering simple questions correctly.
I called Matt's Aunt Kathy to come stay with Graham at the house. My neighbor called to see what was going on and she offered to come over until Kathy could arrive. So I gathered a few things and headed to the hospital. Matt was back to himself by the time he got to the hospital and we waited for a couple hours to see a doctor at the ER. (Side note: everybody thought I was in labor when I came waddling into the ER! Ha.) Eventually they gave him some Kepra (a seizure medicine he takes regularly) to prevent another seizure and sent us home.
Matt already had a neurology appointment scheduled for the next day. The neurologist decided to start Matt on an additional medicine. By being on two different medicines at low doses, he may avoid any serious side effects from either. Matt has been on the full dosage of the new medicine for a couple weeks now but continues to have mini episodes where he loses his concentration. The neurologist told us that our goal is to end these episodes and then we can be more confident that he will not have any more grand mal seizures. Matt had another EEG and has MRI scheduled for the last week in September, 6 months from the previous one. At this time there is no known cause for the seizures, the doctors are just trying to treat them with medication.
So Matt still isn't driving and plans to contact the neurologist this week to discuss the next treatment steps. Having the second grand mal seizure made us realize that this wasn't a fluke and that there is really something serious going on. This has been difficult to accept, especially since there are so many unknowns. With me on bed rest and Matt not driving we are basically shut-ins at age 29 (ha!). But we are so thankful for family and friends who are helping us and supporting us. Please pray that we will get Matt's seizures under control with medicine. Also pray for humility and grace as we have to rely on others so heavily for daily life right now.
After Matt's neurology appointment we went by Krispy Kreme for a treat. Graham was not a fan of the hat nor the doughnuts. Crazy kid.
I called Matt's Aunt Kathy to come stay with Graham at the house. My neighbor called to see what was going on and she offered to come over until Kathy could arrive. So I gathered a few things and headed to the hospital. Matt was back to himself by the time he got to the hospital and we waited for a couple hours to see a doctor at the ER. (Side note: everybody thought I was in labor when I came waddling into the ER! Ha.) Eventually they gave him some Kepra (a seizure medicine he takes regularly) to prevent another seizure and sent us home.
Matt already had a neurology appointment scheduled for the next day. The neurologist decided to start Matt on an additional medicine. By being on two different medicines at low doses, he may avoid any serious side effects from either. Matt has been on the full dosage of the new medicine for a couple weeks now but continues to have mini episodes where he loses his concentration. The neurologist told us that our goal is to end these episodes and then we can be more confident that he will not have any more grand mal seizures. Matt had another EEG and has MRI scheduled for the last week in September, 6 months from the previous one. At this time there is no known cause for the seizures, the doctors are just trying to treat them with medication.
So Matt still isn't driving and plans to contact the neurologist this week to discuss the next treatment steps. Having the second grand mal seizure made us realize that this wasn't a fluke and that there is really something serious going on. This has been difficult to accept, especially since there are so many unknowns. With me on bed rest and Matt not driving we are basically shut-ins at age 29 (ha!). But we are so thankful for family and friends who are helping us and supporting us. Please pray that we will get Matt's seizures under control with medicine. Also pray for humility and grace as we have to rely on others so heavily for daily life right now.
After Matt's neurology appointment we went by Krispy Kreme for a treat. Graham was not a fan of the hat nor the doughnuts. Crazy kid.
Saturday, September 13, 2014
Pregnancy Update - 32 Weeks
I have made it until 32 weeks! I started having pretty serious contractions last week and went to see my OB who sent me on to the hospital. They gave me a couple doses of Nifedepine in the hospital and gave me the first of 2 shots of a steroid (betamethatsone) to boost the babies' lungs in case they are born early. Matt was in Alabama for work and thankfully my mom was here to help with Graham while I was in the hospital. I was only in the hospital for a few hours and then went back to the OB the next day for a check and the second steroid shot. I was 2cm dilated at the OB on Friday morning.
They gave me a prescription for Nifedepine and told me to rest. It took all day long, many phone calls, and a trip to Clayton to get the prescription filled. Very frustrating.
Matthew came home Saturday evening and then Saturday night my contractions worsened to 5 minutes apart and we went to the hospital. They put me on a magnesium drip for 12 hours and I stayed in the hospital until Tuesday. Thankfully the magnesium wasn't as bad as I was warned it could be. I didn't get nauseous so I was allowed to eat. It just made me feel hot and weak. (So I had to get a catheter.) The magnesium was to help slow contractions and to benefit the babies' brains in case they are born early. I had to miss a baby shower planned by friends on Sunday afternoon which was a huge bummer.
I am home now on bed rest and taking the Nifedepine. I am still having contractions that range from sporadic to every 10 minutes. My mom and Matt's mom and a few friends are helping out with caring for Graham and everything else around here. We are so humbled and thankful for our church friends that are praying, offering to help, and bringing us meals. We are praying that I carry the babies to 36 weeks but every week that they stay in the womb is beneficial.
I hope to post updates on Matt's health and Graham's health soon.
And now a few pics:
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They gave me a prescription for Nifedepine and told me to rest. It took all day long, many phone calls, and a trip to Clayton to get the prescription filled. Very frustrating.
Matthew came home Saturday evening and then Saturday night my contractions worsened to 5 minutes apart and we went to the hospital. They put me on a magnesium drip for 12 hours and I stayed in the hospital until Tuesday. Thankfully the magnesium wasn't as bad as I was warned it could be. I didn't get nauseous so I was allowed to eat. It just made me feel hot and weak. (So I had to get a catheter.) The magnesium was to help slow contractions and to benefit the babies' brains in case they are born early. I had to miss a baby shower planned by friends on Sunday afternoon which was a huge bummer.
I am home now on bed rest and taking the Nifedepine. I am still having contractions that range from sporadic to every 10 minutes. My mom and Matt's mom and a few friends are helping out with caring for Graham and everything else around here. We are so humbled and thankful for our church friends that are praying, offering to help, and bringing us meals. We are praying that I carry the babies to 36 weeks but every week that they stay in the womb is beneficial.
I hope to post updates on Matt's health and Graham's health soon.
And now a few pics:
The belly at 28 weeks. I need to take a new picture I guess.
A sneak peak at the twins nursery. (the crib bumpers)
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