Our week has been pretty busy now that my school semester is in full swing again. I had Monday off but I had to take Xander to a Dermatology appointment. He has had this really weird looking wart for months now and nothing we have tried has gotten rid of it. This is probably our tenth visit to the dermatologist for treatment. Instead it has just grown bigger. Xander used to say he had a house for the virus living on his thumb. The other day he told me the house has turned into an apartment complex and I think he may be right.
Xander was excited because I took him up to see Ronan after his appointment and let him pick out a special lunch. On the walk to our car in the hospital parking lot Xander found a bunch of cocoons hanging from a fire hydrant He had to watch them for a few minutes in hopes that they would crack open in front of him.
Ronan is doing ok but still in the hospital. I talked to the doctors some and told them how I felt about everything. They modified his pediasure intake a little and started him on continuous night feeds. Basically he gets an ounce of pediasure an hour for nine hours through the night through his tube. He has a pump that pumps it at a steady rate.
His glucose levels have been ok since they are feeding him almost continually now They were also talking about how he's gained a couple of pounds. But I know he's gained because he's on such a high amount of IV fluids and sugar drip. I know when he comes off of that he will probably go back down again. Right now everything is still wait and see.
Some other child who was in the hospital was given a lot of balloons by friends and family and wanted to share what he had with other kids in the hospital. Ronan got to have one of the balloons. He loved it and played with it most of the morning.
I had another ultrasound today. Baby is looking great. They are going to do another ultrasound in a month then every two weeks and then once I hit 32 weeks I will go twice a week for nonstress tests and ultrasounds. If anything looks concerning they will move the tests and ultrasounds closer together. If she stops growing she will be delivered early. The tech confirmed she is indeed a girl.
Inara is reverting to babyhood. She found a pacifier with some baby things and thought she would demonstrate its use. She never used a paci when she was little just her two fingers. She thought she was pretty funny with the paci in her mouth.
Above is Inara saying goodbye to Daddy. After she gave him a hug goodbye she ran over to the kitchen window to wave and watch him leave.
We dug out the boys' school desks. They had been put away when we moved out for renovation this summer. I think they stay focused much better with their own little area.
And here are the extra pics.
Gone are the days of sitting and thinking of clever titles for my blog posts. Perhaps I will become more original at some point in the near future. Until then this is the weekly Fullmer kid update. Minus Ronan as I have dedicated another blog post to him.
Jadzia is going on Vacation. Perhaps to Hawaii or Denver. She hasn't decided which yet. All she knows is she needs to get away from her brothers. She revealed this plan after nap time today. She even asked me to call her a cab. She drew a map so she could find her way home after her vacation was over. I asked her how she was going to pay for the cab and she asked me if she could borrow a dollar. Apparently a dollar can buy you a pretty long ride to Denver or Hawaii. In the end she put off her vacation until I can take shopping for better quality traveling shoes.
Landon and Xander had fun with fiber optics this week. They found a science kit their grandma had bought them awhile back and asked their dad for help.
According to them it was great father son bonding time. According to Isaac it was the boys running around the upstairs bedroom while he assembled them. In the end I guess it just matters that they remember it as a great time with their Dad.
Inara turned 19 months this week. She is still the princess of chit chat. Her words and sentences are more clear. She finds herself and her jabber pretty funny. She will say a sentence super fast and when you ask her what she just said she breaks out laughing hysterically.
She misses Ronan quite a bit. She's made piles of his stuff and then told everyone that it belongs to Ronan. When you ask her where he is she says "He's at the hospital." Every meal time she will point to his chair and say "Ronan, eat." Below is her holding up an empty gallon of milk and yelling "Strong!"
We have been working on her sucking on her fingers less but so far no luck. She keeps insisting they are stuck in her mouth.
Here are the rest of the pics of the week.
It's been a while since I've posted a blog update and I believe the last time was when Ronan first got put in the hospital again. He is still in there and I don't see him getting out in the near future. This is because they flipped everything around they changed his low protein diet to a high protein one. They stopped his medication. I told them that pediasure makes his sugar worse but if he has Dumping Syndrome it should help so they bumped him from four ounces three times a day of pediasure to eight ounces four times a day.
They took him off his juices, fruits and vegetables and put him back on all animals products like meat, eggs, and yogurt. I told them this would make him worse but they insisted on trying. And I figured well let them see for themselves. When Ronan was put in the hospital he was having lows once in the evening and some days not at all. I was very strict with his protein intake. Now that he is back on the high protein diet he is having 3-4 lows a day. He is having them in the middle of the night something he never ever had here at home not even once. The middle of the night lows are because they are giving him a bed time snack of eight ounces of pediasure (to help his sugar).
They have the data from his home meter. They know he was having them maybe once a day with me and even though he is having them 3-4 times a day on their diet and med change they refuse to believe me it is the pediasure. His Endocrinologist returns Tuesday and I'm going to talk with her and tell he exactly how I feel about how much worse this is making him and seeing what she says. Isaac and I are going to be praying about how to handle this. Isaac thinks we'll wait another week and see if they will change things but if they continue down this path and Ronan continues to get worse we are going to have to seriously think about the next step we need to take.
I think I'm going to call his pediatrician as well and get her input. She has never steered me wrong in the past and I trust her judgement. I have to look out for Ronan and that is my first priority. I'm going to try and get them to put him back on a low protein diet so they can see for themselves and maybe then head in the right direction but I'm just his mom so what do I know?
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.
