Having a good morning

Although I have some general updates over the past couple of weeks, I thought I would just share a little video instead. The other day Jacob was in an overly happy mood in the morning. I was able to capture a little bit of it on video. I don't know if he was really trying to mimic my words/sounds, but whatever the case may be, it was the highlight of my week. Enjoy!

(I will give the updates in another post shortly)

Splints, braces, and a good week

Jacob finally received his hand splints, foot braces, and benik vest. The benik vest is basically a neoprene vest that velcro's on to him and is supposed to help him sit upright. He currently is pretty loose and floppy in his chest/waist area when you hold him. We had the appointment at our house for his fitting and it went rather quick. It is suggested that he wears these around 6-8 hours a day. Jacob does not mind the hand splints and benik vest. We can leave these on him for an hour or two at a time. The foot braces on the other hand is a different story. He only tolerates them for about 30 minutes so we have to build up his tolerance to wearing those. It may be a combination of how tight and restricting they are, along with how hot and irritating they get. It will just take time.

And I am sure I am going to regret saying this in fear of jinxing myself, but Jacob has had an amazing week. This is probably the best week we have had with him since he has been born. He has been eating well, napping consistently, overall seems comfortable and content, and sleeping pretty good at night. Maybe his bronchiotus is finally cleared or he is now adjusting to the new medicine doses. Whatever it is, we will take it. This great week along with the sunshine and warmer weather has made life good! Here's hoping this trend continues :)

Some overdue pictures

I have been horrible with adding pictures to the blog because I usually do all of my entries from my phone. When I try to add photos it never seems to work. I finally transferred some pictures to our computer to share. Below are some pictures of our adventures with Jacob over the last few months. Enjoy!

 Trying to feed Jacob solids.

 What he enjoys most, WATER - at aquatic therapy!

Jacob's stay in the PICU.

Feeling better and being transferred to the main floor.

Jacob loves his big brother :)

Not so happy about his new chair.

Getting his beach body ready.

Not amused.

Trying out his new wheels.

Say cheese!

Cruising with Dominic.

Jacob didn't think my joke was funny.

Neurologist and a new pediatrician

We met with the neurologist this past week as part of our monthly updates with him on Jacob. As usual there were no appreciable changes in development with Jacob. Shawn and I expressed our concerns with his sleeping and overall level of comfort. We also spoke to the neurologist about our expectations with Jacob when it relates to his quality of life, anticipated seizures, development, and a few other items. The neurologist spoke first about the seizures. He noted that he is a little surprised that Jacob has not had any seizures, but it does not mean that they will not be coming at some point in time. He said it really is just a matter of when they will begin. We asked if all of his medication may be holding them off and he stated that his seizures will most likely be too powerful for medication to control. The neurologist went on to address his sleeping situation. He understands that it is important not only for Jacob, but for all of us, to be able to sleep and get rest to function. He decided to start Jacob on another medication to possibly help him relax a little bit better. This will be Jacob's fifth medication that he has to take multiple times a day. Since he has started this new drug we have seen a little improvement with his sleeping. At this point we will take any small step in the right direction!

The neurologist then spoke to us about Jacob's development. He mentioned that even though Jacob's head and body are growing, his brain matter is still severely affected. He said that currently Jacob is functioning at a one month old level. In his lifetime he expects him to maybe advance to a three or four month old level. Hearing that plain out hurt. As a parent you invest a lot of time and energy into your children in hopes that they will grow up one day to be happy, healthy, and independent individuals. Knowing that Jacob may not advance beyond an infant developmentally is tough to swallow. Regardless of this, we will still continue to love and nurture Jacob so he can reach whatever his highest potential will be, while being comfortable and happy. The neurologist then talked about other genetic testing he would like to perform to still try to find a cause for Jacob's condition. As long as insurance covers the testing, we plan to follow through on it.

Today we met with Jacob's new pediatrician. Although a bit further of a drive, we decided to switch primary physician's because we felt our previous one did not feel comfortable with Jacob as her patient. When we would go to our monthly check ups she did not say much to us about our son and she did not seem to care about any updates we had on Jacob. The other specialists said that we should always funnel everything through the primary doctor first. The few times we tried to do that, our previous pediatrician would just refer us to the palliative care team. Our new pediatrician took time to really get to know Jacob, Shawn and I, and our overall care plan for Jacob. He was engaged the entire time and sees himself as a key person when it relates to Jacob's care. At the end he sent his nurse in to meet us so we could put a face to a name if we ever need to call with any questions. Overall, we were very happy with the new pediatrician and glad we made the switch.

As an update to the botox - we have seen some improvement in tone, but not as much as we would have hoped. Jacob can open his hands more than ever before, but his legs are still pretty tight. They say you may not see positive outcomes until the second series of botox. The second round will not be for another 3 to 6 months. But again, we will take any improvement no matter how big or small it is.

Next up - Jacob receives his braces and splints next week!