Big Boy Room and More Changes

So Caleb finally got all his big boy furniture in his room! I couldn't believe when I walked in how grown up his room looked, no evidence of a baby anymore :( But it is good that he is growing and is in a big boy room

First night sleeping in his big boy bed.

He loves waking up in the morning and seeing himself in this mirror from his bed.

One fixture that we are so glad that is not in the room anymore is his IV pole. I can't believe at one time we had three pumps (two for his IV and one for his feeding tube) on the IV all the time and that he was at one time constantly hooked up to those pumps! So his newest accomplishment is that he has been drinking and eating enough by mouth that he is sustaining his weight so he doesn't need supplemented by the feeding tube at night anymore.

In relation to the feeding tube, he has also been taking his meds by mouth. He still resists when he sees me coming with the syringes at med time, but he is doing well. So since Caleb is taking his meds and eating and drinking well we decided to...

now ya see it

now ya don't

After we got done taking the g-tube out and putting the bandaid on Caleb seemed happy...

Sometimes, these holes, left by the g-tube will heal on their own, within a couple hours, other times, they don't. It has been a day now since we took it out and Caleb's is still leaking a lot, requiring many dressing and shirt changes. With how long Caleb has had his, and with how the stomach lining started to come out of the hole (sorry too much info) we are worried it may not heal on its own. If not, it will require to be stitched in surgery. Please pray this heals on its own and that he doesn't need surgery to close it up! Way to go Caleb on another HUGE hurdle!

Also, Caleb's hernia surgery is schedule for April 7th. The craniofacial team does not want to group the nose repair with this surgery as they feel it would be too much at once. So, as long as the surgery goes well and he extabates okay it should be a same-day surgery. We did ask if they would just go ahead and close the hole left from the g-tube while they are in there, and they said they would rather wait a couple weeks. I am a little upset with their response as if he is in there, why not do it while he is under rather than doing another surgery and exposing him to more General anesthesia. We are also planning a little vacation in a couple weeks, and it would be really nice if that g-tube site was closed up. So please pray for a smooth surgery and that the g-tube site heals quickly and on its own!

Also, we are meeting with new therapists tomorrow for Caleb's evaluation. This is the therapy I talked about a couple posts back that will be an out-patient clinic therapy that he will have to go to the site and do his therapy. They have tons of equipment that we hope will help Caleb with his delays!

Way to go Caleb for all your continued achievements!

Thanks all for checking in!

God Bless you all!!

God Bless Caleb!!

Clinic Appointments

So as promised I am updating regarding Caleb's clinic appointments last week. Very busy week to say the least.

So on Monday we saw the whole craniofacial team, our family. This was the first group of docs that we met at Children's so we feel very close to all of them. They always watched over us and Caleb when Caleb was in the hospital. We hold them all very close to our hearts. With that being said, a couple things resulted from Caleb's clinic appointment with them. First, he needs to have his teeth cleaned, and thankfully he will not have to be put under General Anesthesia to have his teeth cleaned. I will be able to hold him when his teeth are cleaned. So thankfully that is one less exposure to GA. Also, Dr. Losee, Caleb's craniofacial surgeon, did suggest Caleb have his nose repaired one more time since Caleb didn't have the optimal molding circumstances prior to surgery due to how sick he was. So he said he would like this to be done before Caleb starts school. We also talked about tacking Caleb's right ear back at that same time. His right ear was folded over in utero therefore it grew bent over. The tacking of the ear will help his hearing aid stay on better also. Since this is the better of the two ears, hearing wise, and this is the only ear that can wear an aid, we want it to be the best fit for wearing the aid too. We also saw a speech therapist, who based of what sounds and words we told her he says (as he still doesn't talk in public yet as he if VERY shy when he gets out as being in public is very very new to him) they think his palate repair is working well in regards to his speech. We were then off to see ENT and audiology. They did another hearing test and it seems like the results are the same as in the past, severe deafness in the left ear and moderate to severe hearing loss in the right ear. These results are still surprising to all of us that interact with Caleb as it seems he hears so much and some things that are so low-toned and quiet. Also the ENT said that now they suggest a Catscan to see if there is anything anatomically that is causing the hearing loss or if there is anything that they could do to help his hearing. After that test, Caleb will then be seen in the Hearing Center to review the results. I did again ask if Caleb was a candidate for cochlear implants and they said that since he has a little bit of hearing in the one ear they do not want to do cochlear implants at this time, unless his hearing gets worse. Cochlear implants destroy all natural hearing and the hearing is replaced with an electronic style of hearing so he is not a candidate at this time as they do not want to destroy what hearing he has.
On Thursday, Caleb had an appointment with General Surgery to have a post opp appointment regarding his circumcision and to see what they think about the spot that I thought was an inguinal hernia. Well, first the doc said he healed well from the circumcision and I was right it is an inguinal hernia, which needs repaired ASAP. Ugh poor guy, I was really hoping, which I new wasn't realistic, that they would say let's see if it heals on it's own. But in the back of my mind, I knew that wouldn't be the case.
After that appointment I then walked over to craniofacial and told them what we found out about the hernia and that Caleb would need surgery and asked them if they would want to do the nose and ear repair at the same time, for one less GA exposure for Caleb. We have done this in the past, group surgeries together (logically though-not doing too much) to limit the amount of times Caleb is exposed to general anesthesia. But again, this depends on what is being done, who is doing it, the amount of pain that could be involved, etc. So there are plenty of factors. We are still waiting to hear back from Craniofacial as to whether they want to do these surgeries together. I doubt that they would feel comfortable doing a hernia with a nose repair, based on the locations of the surgeries. We will see. I will update when I hear. He also has an appointment with the Children's Immunologist on Friday and I will update on that too. Sorry this update took so long, but I was very tired after all the appointments last week.
So I wanted to include some pictures this post too! I included some of Caleb out in the snow for the first time, so cute.

Bundled up to go out. HA HA too cute right?!?!

Caleb peeking next to our awesome dog, Saba.
Caleb also just got new big boy furniture for his bedroom. I can't believe how grown up his room looks. I will post those pics soon. You won't believe it!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!