Sick... AGAIN

For the past week now Jacob has been battling an illness of sorts. He has had an on again, off again temperature, along with being extremely fussy, tired, and overall lethargic. Jacob also has a bad cough and his breathing sounds miserable. It is hard on a daily basis hearing him wheezing with very deep, almost labored sounding, breaths. This unfortunately is to be expected when he gets sick though. As stated before in previous posts, he does not have the ability to effectively clear his airways so he struggles with respitory functions. We have been watching him go through a cycle of sleep, startle, scream, sleep, startle, cry, cough, sleep... Well, you get the point. I hate to see him look so miserable and in such pain, but there really is nothing we can do. And his sleep is horrific. I feel like he is a newborn again waking every hour or every other hour just screaming. We had to skip therapy for him this week too which I am sure does not help either. We hope that Jacob starts to turn it around here soon before he lands himself in the hospital again.

A couple other updates too. Palliative Care came out this week to do a home visit to see how Jacob was doing. We expressed our concerns how he is still very high toned and how he can be stiff as a board when you're holding him. They discussed some different options but really it sounds like more medicine is the key for now. The good news is Jacob's appointment with the physiatrist got bumped up to this Monday. A physiatrist is a rehabilitation and pain management doctor. They will hopefully help us figure out ways to keep him comfortable and not as stiff with his tone. Jacob also got a new bathing chair this week since he cannot sit up on his own and he has definitely outgrown his infant tub. We will try this out soon and hopefully it will make that time a lot easier and less stressful. I think Dominic likes to use it as a lounge chair in the living room more so then having Jacob use it in the bathtub. I found him on it the other day reading a book. Oh Dominic, never a dull moment with you!

Here's hoping this is a better week for Jacob!

Some updates

Thought I would give some updates on Jacob. Nothing major, just little odds and ends updates. Jacob started with a new aquatic therapist last week. This is his third therapist in 5 months. To my surprise, the transition has gone very well. She has done great with him and is comfortable with Jacob in the water. She has only dunked him once.. So progress! Jacob's new therapist also has been doing pediatric therapy for 17 years so she is pretty established. We may even be able to have her come to the home to do some land therapy with him, which he struggles with. To date, he can not hold his head up, roll over, lift his head for long periods of time during tummy time, sit, or grab toys. So anything she can help us with for Jacob is a plus.

Speaking of milestones, Jacob has yet to eat any solids and he just turned 8 months. We have tried several times to feed him rice cereal but he struggles with 2 things: head control and understanding how to swallow food. So as it stands, he is going to remain on formula for awhile. Most of these types of babies never will fully learn how to eat on their own. The steps to eating solids is too complex for their thought process. One big plus is that we are starting to get some relief when it comes to paying for his ungodly pricey formula he has to be on. Jacob has been approved for additional insurance for medical handicapped kids and they assist with paying for the formula. This has been a tremendous gain especially since we are on one income right now.

Another update is Jacob has been fit for hand splints. He often has his hands fisted and is unable to reach for or grab objects. The splints will make it easier for Jacob to keep his hands open and the thought process is that he may be able to eventually attempt to reach and grab for objects. I am glad he will be receiving these because at times his little hands will begin to turn purple from clenching them so hard.

One other update is Jacob is back to sleeping inconsistently 😴. I think this is going to be a common theme for him unfortunately. Last night alone he was up three times throughout the night. Two times a night is the norm for him. The hard nights are when he wakes, you feed him, give him meds, and then he is up for the next hour arching and fussing. Jacob is now 18 pounds and it becomes hard to basically wobble around an 18 pound agitated baby for an hour. It is starting to do a number on my back to say the least, along with my soon to be gray hair! The neurologist did give another med to help him sleep better but we have seen no positive effect as of yet.

Besides all of that, we are set up to see the physiatrist at the end of February and the neurologist at the beginning of March. Until then we wait... And wait... And wait to see what is around the corner for Jacob.

Oh yes, and to top it off, we started Dominic in preschool this week. Although it is only 2.5 hours a day for 3 days a week, it nearly breaks my heart. He was a trooper on Monday and trudged through it. Today, for his second day, not so much. He did not want to go and did not want me to leave. I left him in big, sobbing tears there. I am not ready for all of this!! Ha..

Closing the book on 2014

I think it is safe to say this has been the longest, most emotional, and challenging year to date. It truly is overwhelming to think back to January and all that has occurred over the course of this year. We have been through so much but have also come so far with the birth of Jacob. We endured much heartbreak but also gained much love from this little man. We also have seen what a champ Dominic has been and what an awesome son and big brother he is. We are happy to finally close the book on 2014 and start over in the new year. It does get a little frightening though to think about what may come in the new year. With Jacob's diagnosis and prognosis, will it really get better in 2015? Stay the same? Or get worse? This holiday season was a bit harder than I would have expected. I often pondered the thought while celebrating Christmas with our family, could this be Jacob's one and only Christmas? Hard to believe that could be the reality of it all. I am glad we did have so much time together as a family and enjoyed each little moment. Although we don't know what is around the corner, here is hoping that 2015 is a bit calmer and quieter than this past year!