Jacob can read!!!

He can read!! Okay, okay, not really... But Jacob sure could have fooled us. It seems as if after posting about sleep being overrated, he decided to be a good little baby and start sleeping more (except for last night). It was as if he read the blog and said "hmmm, maybe I'll cut my parents some slack." Or he is a fan of reverse psychology?!? Whatever it is, we will take it! After Jacob's hospital stay we decided to convert him finally to his crib. Due to his spasticity, laying on a harder flat surface is not comfortable for him. I found a baby memory foam pad for the crib and that did just the trick. Since we put him in his crib he is sleeping from 10:00 to 4:00-5:30. After we feed him he than sleeps to 8:00 most days. It is definitely a breath of fresh air to get him moved out of our room and sleeping a little more. Now if only I can re-wire myself to sleep straight through until 4 or 5:00.

Besides that, we did have an update with the neurologist last week. He still feels that seizures are due to arise any day for Jacob. Although I know it is most likely inevitable, it is still so hard to believe we will be facing multiple seizures daily with our little man. The neurologist also noted no appreciable change in development with Jacob, which always hurts to hear. Unfortunately it is the truth though. He decided to up his med dosages because his spasticity was getting pretty bad again. This could be a reason too I am sure why he might be sleeping better because his body can relax a little better. We do not go back to the neurologist until March now.

One last update is our aquatic therapy. Unfortunately Jacob's therapist decided to leave the practice due to 2 other jobs she already has. Jacob was starting to do pretty well with her and enjoyed his weekly pool time. We were just informed that the new therapist they brought in does not have experience with young pediatrics... GREAT! They are looking to possibly bring someone in on a contracting basis to work with Jacob and another little boy there. This is not a guaranteed agreement yet. If this does not work out then we are back to Akron and back to rushing around with long, drawn out days of appointments. I really hope we can stay close to home because life has been so much more calm and less stressful not running out to Akron every week. The downside of all of this is by the time we figure out what is going to happen, Jacob will be out of therapy for 3 weeks. That is never a good thing.

That's all I have for now...

A short hospital stay

This past weekend we ended up taking Jacob to the ER. He has had a horrible choking cough, very irritable, sleeping all day, and ate only 5-6 ounces in a 24 hour period. They ended up admitting him for a little over a day to give him fluids, monitor him, and check his eating. What they concluded is that Jacob probably had some type of viral infection creating all of these issues. The doctors there noted that kids with Jacob's type of condition are more susceptible to respiratory infections and it can hit them harder. It is unclear if this is solely from a virus or if it is also contributed to his neurological issue. The neurologist stated a little while back that at about the 6 or 7 month mark we could start to see some issues arise. Up to this point a baby's brain stem is running many functions of the brain. At around the 6 month mark, their brain starts to take over function. Since it is unclear the exact issues Jacob will face with his brain condition, he could face issues with swallowing, feeding, etc. when the main brain takes over. We are hoping this is not what we are seeing right now.

After about 24 hours of being admitted, they released Jacob and want us just to keep an eye out on his fluid intake. Although he is not eating what he was before, he is eating enough to stay awake longer and smile and giggle. I think he is on the up and up :)

Sleep is overrated

Sleep? SLEEP?!? What's that? If Jacob could talk, these would be his words. He has had a very bad week unfortunately. The screaming has dramatically increased and the sleep has overwhelmingly decreased. It is hard to watch Jacob in so much discomfort, so much irritation. We called twice to the neurologist to address this only to be left with no call back. Frustrating to say the least. Along with the crying, he has began to cough/choke on a regular basis throughout the day and night. There have been several nights this week he has been up for 3-4 hours just coughing so hard that his overnight bottle became a canvas painting all over our clothes and him. Jacob also is eating much less this week. He is getting back into the habit of showing signs that he is hungry, but unwilling to drink his bottle. We are just at a loss for what to do. It has been tiring and stressful, especially when you try to call for help with no answers in return. The one plus at least to this week is that Jacob's one hour EEG he had yesterday came back normal. So as of now, he is probably in the clear still for no seizures! You get the good with the bad I guess.