Ronan's Endocrinologist called me yesterday morning to let me know she wanted him back in the hospital. When she had seen him on Friday she had taken is ammonia level and it was normal and this means he does not have HIHA because with that ammonia is consistently high and his has only been once. This leaves the dumping syndrome.
I'm not convinced. Protein does make Ronan's sugar go low but sugar never does. I know this because if we give him fruit and juice he stays high and feeling good. If we give him pediasure, yogurt or meat he goes low within two hours and is miserable. I'm not sure the doctor believes me and is putting him back on a high protein diet. The last time he had a high protein diet he had two seizures within hours of switching him to high protein. But since they are convinced this is dumping syndrome they are convinced protein doesn't hurt him. This is because with dumping syndrome it is sugar that makes a person crash. I guess we'll see who's right.
They have also taken Ronan off the medicine he was on to keep his sugar up. He will be here at least a week and his doctor says we're starting from square one. Also if this is dumping syndrome then in a few months he should no longer go hypoglycemic. This is because dumping syndrome is a complication of the fundoplication that resolves itself within a few months of the surgery.
On to the other kiddos. Jadzia still really wants to be a ballerina. Few days go by when she does not put on a tutu at some point.
And of course when she's not a ballerina she's a princess.
Inara has recently become insistent on enjoying popcorn with the big kids. I'm still not big on giving her popcorn as it can be a choking hazard for little kids. Here she is with her special bowl. Grandma broke up the popcorn and made sure it had all soft pieces. She was happy to feel like one of the big kids.
Ronan's big brothers are his best friends. He follows them around and will just sit and watch them play. He has the typical little brother annoyance when he knocks down their lego towers for the tenth time. He doesn't understand why they don't find it as funny as he does. after all his therapists worked for weeks trying to get him to knock down a block tower. But when it comes down to it his brothers love their tower destroying little brother. I know they will always watch out for Ronan.
Xander has some exciting news. He finished his entire kindergarten math book half way through the year. He is a little math whiz and grasps the concepts pretty quick. Since he has finished his math book I am ordering him the first grade one. Maybe that will be a little more challenging for him. Now if he would just take an interest in letters we would be set.
As always here are the random pictures of the week so far.
I haven't taken really any pictures today so I know this post won't be as exciting as past posts but I thought I'd update people. I had my 20 week ultrasound and we decided to find out what the baby was after all. Everything was looking good. All the measurements were on target and the anatomy looked good. The tech scanned and proclaimed "She's a little girl". So we will now have three boys and three girls. She left and then the doctor came in.
The doctor said everything looked great and the only issue was the baby had a two vessel cord rather than a third vessel. Blame it on the medical shows I watch, the online message boards I frequent or the fact I have a medical transcription certificate for whatever the reason my heart sank. I knew exactly what this could entail. The doctor went on to say that the baby looked great and was measuring right on track so he had no concerns over any other possible abnormalities.
The two vessel cord most often occurs in female babies. The most common problem that arises is growth restriction because the baby is unable to get enough blood flow and nutrients. But with close monitoring things usually are fine. The recommended monitoring plan is ultrasounds about every three weeks and then nonstress tests starting at 32-34 weeks. I don't know what my doctors will do as I haven't talked to them yet. The doctor I saw today was a specialist at a perinatal center.
This could mean she will have to be induced early and/or may have a low birth weight. Right now I'm trusting God for his protection of my baby girl and I know he knew all about this long before we ever did .
Now on to Ronan. I took him to see his Endocrinologist. She let me know his test (that we've been waiting for since November) came back negative. This means he does not have the genetic defect that causes the form of hyperinsulinism known as HIHA. I always thought it would come back negative because I was convinced this was because of his Down Syndrome. She said she was thinking he may have something called dumping syndrome. Something to the effect of his body dumping food out to quickly causing hypoglycemia. But with this disorder protein actually helps.
This is why I don't think he has Dumping syndrome. I know for sure he reacts negatively to protein. She was honest though and told me she has never had a kid present like Ronan. He doesn't quite fit either diagnosis and she's not sure what to do. She has the Children's Hospital of Philadelphia working on his case (the world experts on Hyperinsulism). They have team that is discussing him and trying to figure him out.
Well that is all for now. Next time I'll be back with more pictures. Today was just a crazy day and we were running around nonstop.
January in Iowa usually brings chills and snow. Neither have arrived yet minus the small amount we got a few weeks back. I heard the cold is coming but for today it felt like Spring had smothered winter and I couldn't complain. I had to take advantage of the coat free weather. Landon leaping off the couch and landing in the middle of the living room convinced me. We were going for a walk. For the first time in January we were going to walk around the lake.
This lake is two miles around and we would make one complete round. My dad went with us. The kids stopped to observe things every so often. The boys saw a poor fish swimming across the ice, desperate to find a hole to go back into the safety of the water.
Here is Jadzia and Grandpa. The exact conversation that was going on here went like this. Grandpa looked at Jadzia's wand said "Fairy Princess Jadzia, Are you going to grant me a wish." Jadzia laughed and shook her head and said. "Silly Grandpa, I only grant wishes to children."
Before the walk I took Ronan into his GI doctor to have his button looked at. It looked pretty bad this morning and had a lot of blood caked around and under the button. I tried cleaning it the best I could but was afraid I'd pop it off since its just held in by one stitch. When we arrived at the doctor he cleaned it really well underneath and it looked horrible. He believed it was infected or that the metal prongs holding it in were starting to push out.
Eventually that button should fall of but not for another few weeks. For this reason if I start to see metal poking out then I have to call the GI office immediately. He put Ronan on some antibiotics and told me to call Monday if it was the same or worse. He also said that if Ronan spikes a fever 101.4 or higher to call him right away.
Tomorrow is a big day. Ronan has his Endocrinology and audiology appointment in the morning. For the afternoon is my ultrasound. I'm excited and nervous. I'll have to post pictures tomorrow night.
Random Pictures of the day.
