Ronan is still in the hospital. Tomorrow will be two weeks and I think they maybe finally figuring out the right doses for his medication. He is off the IV and pretty happy about it as he as able to freely move around his room and the playroom. He is still being picky when it comes to eating and I have come to realize he has to think that eating is his idea. He will turn away from his food and then I will sign "All done". He then gets mad and wants a bite. He doesn't like me telling him he has to be done and will eat. There are other tricks I've tried that seem to be working. When I am not there he doesn't eat at all and I'm pretty sure it's because Ronan has to feel in control.
Now if I could think of the details of how the rest of this week has been. A sort of fog has settled in my mind and I keep forgetting to cancel Ronan's appointments among other things. So we will try to get through this blog post with as much accuracy as possible.
On Monday I took Landon with me to my doctor appointment and then we got some lunch together. He had a coupon for a free happy meal at chic fila so we ate there. I've tried to make it a point to spend extra time with each kid alone since they are seeing me less with Ronan in the hospital I want them to know I still think they are important and matter.
Monday night Jadzia went up to the hospital with me and we watched "Winnie the Pooh's Grand Adventure". The boys came up later to visit Ronan. Tuesday I got more time with Jadzia as it was her speech therapy day. Today it was Xander day. He and I went to the library story time.
Moving on to a random topic: potty training. I have fully potty trained three children. My youngest was Xander. He was fully potty trained at 19 months. I'm thinking Inara might be ready but feel free to give me input on this. And if talking about potty training makes you squeamish feel free to skip a few paragraphs. For a couple of months now she will tell me when she pees or poops.
She will also hand me a diaper and lay down on the floor to be changed. After tonight I'm really thinking she might be ready. She let me know she had gone potty. So I thought I would see how much she understands (I've never told her any of this before) and I said "Where are supposed to go potty at?" She ran into the bathroom, pointed her finger and said "Toilet". With this cue from her I think we will make an attempt at potty training.
In other Inara news she is learning her colors. She will go through the house pointing at objects and then saying their correct colors.
All in all everyone is doing well. Ronan is hopefully getting out of the hospital soon. The next few days will be learning days for me. I need to figure out the new diet, new medications and new treatment plan. I'm nervous about coordinating all of this with his other needs but we will get there. We have an asthma action plan, a GI/esophagus plan, a diet plan and now a blood sugar plan. One step at a time. I have to say it is a blessing we have only been given one plan at a time so I have time to learn before adding more steps so I know we'll get it down.
As usual here are random kid photos. Yes, I need to buy Ronan a car for home as this is the only place he wants to sit.
I think I may need to go to bed early as I feel a twinge of grumpiness settling in. Or maybe it's because I'm starting to feel a bit discouraged as I'm not sure when the doctors will figure this thing with Ronan out. I know God is in control the problem right now is the four closely placed walls are starting to feel as though they are shrinking. The resident came in this morning and told me they try really hard to get all the kids home for holidays but Ronan can't be one of these kids because he has to be 48 hours off of everything before he can go home. This put us at the soonest as Saturday.
I still felt hopeful because they were cutting his sugar dose in half and he had done somewhat ok coming off the highest dose of sugar. He had had one low of 65 last night. Still lower than normal but not horrible. He returned to normal with some applesauce. Things looked promising when he had three ounces of pediasure at breakfast and he kept his sugar up all morning and afternoon.
I got some time out with my mom and my girls. The boys are having fun with the in-laws and Isaac and the girls needed some fun too and the childlife people promised to spoil Ronan so much he'd barely miss me. We took them to the mall. Inara insisted on walking like a big girl. Jadzia held her hand and they both giggled on their journey. Jadzia road the train. We avoided letting Inara ride and she didn't seem to mind. The caution stemmed from when Jadzia was about Inara's age.
We let Jadzia ride the holiday train with Xander and Landon. While it was going she fell forward even though she was strapped in. Her legs were flailing in the air and Landon was trying desperately to set her upright. She was perfectly fine without a mark thanks to her seat belt suspending her upside down two inches from the train car floor. If it wasn't for her wail it would have almost been comical.
After the mall we had a girls' lunch and Inara had to sit in the booth instead of a highchair. She is starting to demand equal big kid treatment. After a very fun time I returned to find Ronan's room empty. The childlife people kept their promise and Ronan was having a blast in the playroom. They had also been giving him frequent rides in a wagon. He attached himself to the wagon so much it now resides in his room.
I went up to the playroom to find him. He had two pretty girlfriends taking care of him. We had a lot of fun until he had to return to his room for a blood sugar check. His sugar was doing great and he seemed very happy. Supper time rolled around and they informed me he was being moved one floor down because he was the only kid left on the fourth floor and they did not feel it was practical to staff an entire floor for Ronan. We packed everything up and made the move. This floor is pretty much empty as well. Maybe a half a dozen kids left.
Ronan's dinner came and he refused it. I tried everything and he would not eat or drink. This is a near first for him as the last time he was this insistent on food rejection he had influenza B. He started acting goofy and I had them check his sugar. It was 50 despite the fact he hadn't eaten and he was on a sugar drip. He would scream at even the slightest suggestion that he should drink something and threw his bottle to the far side of the room a couple of times. They gave him a high dose of sugar and his agitation subsided. He played in his toy car and finally ate his dinner and drank some juice. His sugar returned to normal.
Everything seemed great and he was given a sponge bath and put in nice clean pajamas. About an hour later the nurse came in to double check his blood sugar and it was 49. I thought this was odd since once we stabilize his sugar he stays fine until after breakfast. The tech got a different machine and checked to make sure it was accurate and that machine read him the same. We got him to drink some more juice and after a little while he was up and dancing. They checked him again and he was 108.
I'll find out more of what this means in the morning when the doctors stop by. Until then hopefully he'll keep his sugar up through the night
Ronan is still at the children's hospital and no word yet as to whether he can escape yet. I think we may be a few days away from that but they could surprise me. I'm waiting for his Endocrinologist to make her appearance. I expected her yesterday but she did not come up to see him. I think she stayed away because he had a Esophageal dilation and PICC line placed yesterday. She has been giving orders over the phone but no one knows what the bigger picture is right now and won't know until the Endocrinologist gives everyone more information.
Overall he is doing well and sleeping away currently. We are getting his diet worked out and realize he can't have any milk now. We gave him about three ounces and his sugar dropped. He got to go to the play room today because I had to leave and he was sad. The nurse had a volunteer take him up to pass some time. I was told he had a lot of fun.
Sunday was Thanksgiving dinner at church. The kids were singing in Patch club and Landon had a solo. I left Ronan mid-morning so I could see the kids sing. I couldn't disappoint them plus I needed time with them. Landon was adorable singing his solo and the other kids did a good job as well.
We did the Thanksgiving apple thing my parents do every year with their church. Basically you tell what you're thankful for and you get an apple. Jadzia and Xander both said they were thankful for God and Landon said he was thankful for Jesus dying on the cross. Inara stole my Mom's apple. After church we went down to Thanksgiving dinner and I was glad to have at least one Thanksgiving dinner with my kids.
Yesterday the boys and Isaac went up to my in-laws and they will be there the rest of this week. The boys got new haircuts and my mother in-law took us out to a nice lunch before they all left.
Landon Xander
So the blog is going to need a new name. Due to recent news we can no longer call it 5in5 and it now needs to be 6in7. As Baby Fullmer 2012 Edition will be joining us sometime around May 26th. However at the last ultrasound baby was measuring a week ahead.
Now here are the latest ultrasound pictures and everyone I've showed them to say "Oh it's a boy!" But I feel the need to clear something up. I was almost 13 weeks here and between 12 and 14 weeks all babies look like they are boys. There is something you can do with angle to tell but I did not have one of the poses you need. So in short there is no way to tell at this point boy or girl since all babies look like they are boys. We have decided this time we are not going to find out gender until birth. We think it will be fun to be surprised this time since we've never tried it before.
And to finish the blog post off here are some more random pictures.
