Tuesday, January 22, 2013

Hello Blog World!

Hello Blog World!
It has been a busy couple of months but we are all doing very well. The boys had an amazing Christmas and they must have been extremely good because Santa was very generous! I have not updated this blog since October so I am going to try and do a quick summary of what has been going on at the Baker Household.

The boys are growing up so fast! Aidan is doing so amazing in school. He is already reading and writing. He has made a best friend (Michael) and they are inseparable at school. He had his first play date here with his friends a few weeks ago. I can't believe my little boy is having friends over. When did he grow up so fast! We have been keeping really busy. Jake has 3 therapy appointments a week and I teach art for Aidan's Kindergarten class once a week. I am also working part time so everyday is a busy one around here but as long as the boys are happy and doing well I would go 24/7 for them. Aidan and Jake are so cute together. Aidan loves helping teach his brother how to talk and Jake loves mimicking Aidan and playing with him. He already looks up to his big brother. It is so amazing to watch their bond grow. I am a very proud mama and so blessed to have such great kids. 

Medical Update:
We went back to Cincinnati on December 5th for another round of appointments for Jake. This trip we met with audiology, ophthalmology, and Speech.

Jake has been squinting a lot and his therapists and I really thought he had a vision issue. I was surprised when I found out his vision was great. He had a little near nearsightedness and astigmatism but they said they counter act each other and it is normal at his age. They will see him again in about 4 months but for now he got a great report!

We scheduled a hearing screen for Jake because of his speech issues. We needed to know one way or another if his hearing is causing speech delays. Jake was not very cooperative but it was obvious that he would turn anytime they had a loud tone play. He was not even flinching during the lower or mid range tones. The test showed that Jake had moderate hearing loss. He was hearing tones at a range of 50 or 60 and they would like it to be under 20. He heard voices at a 35. It is not a accurate reading because of his age, he just wouldn't sit still or let them put headphones on his ears. The only way to tell for sure is to do a sedated hearing screen which we are going for this week. If the sedated screen shows the same results then Jacob will need to get hearing aides in both ears.

I was pretty bummed at first at this news because lets face it every time we go up there we get yet another diagnosis. I just want something to go right for the kid. After I had time to really let it soak in I have made peace with it. Honestly the plus side is it would be an answer. A reason for why Jake is so delayed in speech and why the words he does say are so "Tonal". It is also something that can be fixed. Hearing aides can help him hear and that will allow him to really be able to progress with speech. So if he does need hearing aides we will adjust just like everything else. The plus side is if he gets them now he will be used to them by the time he starts Kindergarten. The downside is I pray he doesn't rip them out of his ears and break them because they are expensive!

I found out from the hearing specialist that a main side effect of IV antibiotics is permanent hearing loss and it is common for kids with congenital heart defects to have hearing loss due to medications. Jacob was on IV antibiotics when his sternal incision became infected after his Norwood surgery. Regardless he needed them to save his life so we wouldn't have been able to avoid it.

Speech: Jake had a follow up swallow study and he passed with flying colors. We were going to schedule his Gtube to be removed but about 5 weeks ago Jacob got RSV. He handled it really well but he didn't eat for a few days and I had to tube feed him. He is eating well now but I have still had to supplement some of his liquids through his gtube so we have decided to leave it in until his next open heart surgery. It is honestly really handy to have if he gets sick. It is pretty much the reason he didn't have to be hospitalized when he had RSV. I was able to tube feed him and monitor his oxygen from home.

We also met with a speech therapy while there who basically told us what we already knew. Jake is making progress and to just do extensive speech therapy. Right now Jake is getting therapy 3 times a week. Speech twice a week and developmental therapy once a week.

Jake is talking a lot these days but the sounds are still very tonal which would make sense if he has hearing loss. It may be the way the sound is going in. He has started staying and signing mommy a lot. He yells it and runs up to me when I get home from work and I just melt. I have waited so long to hear him say "Mommy" and I never get tired of hearing it. He wakes up and smiles at me and says "Hi Mommy" over and over. I LOVE IT! He has such a little twang when he says it to. So cute. Can you tell how happy I am about this lol. He has also been spoiling me with kisses.

We are headed back to Cincinnati on Wednesday. Jake has to be there at 10:45 for pre-op. He is having a bronch and a sedated hearing screen. The bronch takes place in the OR under full anesthesia so it is considered surgery although there is no cutting. While he is under they are going to do a sedated hearing screen which will let them know if he has permanent hearing loss. Hematology is also going to do a blood draw to make sure there is no sign of further clotting in his blood.

I will post updates when we get all of the results. Please pray everything goes well. Although it is a minor procedure it is always a risk when they have to put him under. We decided to make this trip into a mini family vacation and take the boys to Great Wolf Lodge while up there. I like to try and plan fun things along with the medical stuff so Jake doesn't just view these trips as negative. I am also excited to be able to attend a conference while there and see some of my favorite heart moms. On Friday, Andy is going to play all day with the boys and I attend a joint collaborative between parents and cardiac centers from around the country. The collaborative focuses on improving outcomes for HLHS children. I am so glad we were able to schedule Jacob's appointments the same week as the conference so I can attend.

We also found out that Jacob will have his final planned heart surgery (Fontan) this summer. I guess I was not expecting it would be this year so it took me by surprise. It shouldn't have but I had it in my head we could wait until next year. His oxygen levels are not high enough to wait. They would consider it if he was consistently in the high 80s but honestly 80 is a high number for Jacob so he can't afford to wait. We need to do it this summer. I will be getting the paperwork done next month and will let everyone know when we have a date. The thought of handing him over for another major surgery kills me but at least it won't be looming over us. Jake has had a major surgery every year since he was born. It will be good to get this behind us and just be able to focus on speech and giving him an amazing life out of the hospital for a while.

I know I have a bunch more to write about but for now I need to finish packing and get ready for our trip. Here are some pictures to hold you over until the next update!