What we are thankful for...

Over the course of this week we were able to spend much needed time with both sides of our family and reflect on what we are truly thankful for.

We celebrated with my side this past Saturday and even managed to get professional family photos that day. This is the first time in almost 25 years that we had a professional family picture with my parents. I am so glad we finally managed to get this done considering we have been talking about it for over 5 years now. Then Thursday we celebrated with Shawn's side. Both of these occasions were well needed days where we could relax, eat, catch up on life, and laugh. We are very close to our families and enjoy the time we are able to spend with all of them. It never turns in to crazy chaos that people fear when it comes to family get-togethers over the holidays. We are thankful and fortunate to have so much love and help from our parents and siblings. From the daily phone calls, update text messages, informative emails, and facetime, we appreciate it all. We are especially thankful for our parents more than ever over this past year. They have given up so much of their time to be there for us. Whether it is watching Dominic while we take Jacob to appointments, coming over to provide a meal, or staying over while Shawn is at work, we could not have made it through this year without them. Our parents have always been a major part of our lives but they have provided so much strength and support for us that it is hard to even explain.

Aside from our family, we are thankful for our friends and co-workers. They are constantly lending an open ear and offering a helping hand if needed. As I stated before, I had to make a tough decision to stay home this year from work. To my surprise, my co-workers at school have teamed together and have been providing our family with meals throughout the past weeks to make life a little easier on us. We are more than appreciative of this wonderful gesture and the time they have taken out of their busy days to think of us. I am thankful for our NORO family and I look forward to paying it forward to them in the future.

And last, but not least, I am thankful for our family of four. Jacob has been a blessing in our lives. As challenging as the days are, he is full of love and hope. Dominic has been an amazing big brother with unconditional love for Jacob. He is a smart little cookie, makes us laugh and we love his crazy imagination. Shawn has been the most patient and understanding husband a wife could ask for. We have faced many hurdles this past year and he has been my rock through it all. Although I wish circumstances were different in certain aspects of our lives, I would not change our beautiful family.

I hope everyone had a safe and healthy holiday.. And steered clear of any crazy Black Friday madness!!

What does Santa get special needs babies for Christmas?? Hmm.. Good question!

As I am wrapping up my Christmas shopping for Dominic, I have yet to begin my list for Jacob. It is not that I have neglected to think of Jacob when it comes to presents, I just have not been able to figure out really what to get him. When I am out at the stores I find myself constantly searching for light and sound toys that would be easy for Jacob to activate by just accidentally knocking his hand on it. Most of the toys have specific buttons babies have to push for them to play music and flash lights. I need something simpler. I have only come across two toys that would work. One is the Munchkin Mozart Music Cube and the other is a little lighted rattle. Beyond that, I am stumped! I find myself again saddened and frustrated when I am at the stores in the toy aisle. They are all developmental toys to engage babies in learning how to grab, crawl, walk, interact, etc. It is not that I don't want to encourage Jacob in all of these milestones, but the reality is that he most likely never will fall in to these developmental categories. To be blunt, it just sucks. So what will Santa bring Jacob for Christmas?? Stay tuned as I try to figure it out...

Aquatic Therapy

We started Jacob in physical therapy at around 2 1/2 months. This is when they first noticed that he was very hypertonic. He was originally assessed for regular physical therapy at Akron Children's Hospital but he did not tolerate it well. He would scream and squirm if anyone ever touched him to stretch him out. The therapist there recommended aquatic therapy. In the first session Jacob tolerated about 25 minutes in the water. By the third appointment he was able to tolerate the entire 45 minute session. He really loved the water! His therapist, Miss B, was also very good with him and he made a lot of progress with her. We continued to take him there each week for the next eight weeks. The 45 minute drive there was becoming a pain with him screaming in the car and it also become a lot carting Dominic back and forth with us. It took nearly 3 hours for us to complete a 45 minute therapy session by the time we drove there and back, and completed his therapy. Along with all the other appointments and home visits throughout the week we felt this was too much on our family. We inquired about an aquatic pool for therapy closer to home. We came to find out that there was one five minutes from our house!

We began therapy with Jacob at the new place about three weeks ago. We hated to move him from Akron Children's because he was doing so well. Also at Akron they deal solely with babies and children. The place by our house is a regular physical therapy facility and they never worked with a baby in the pool before. After the first week Shawn and I really had to weigh the pros and cons of changing locations because we felt he may not make as much progress with the new therapist. We decided to stick with the new therapy facility by our home because it took an hour to get there and back, along with therapy. Also one of us could actually stay home and play with Dominic. The new therapist is not as experienced and seemed a bit uneasy at first handling him in the water. Let's just say we had to tell her a few times that his head was going underwater while she was working with him, whoops! He will be going into his fourth week now and I'm glad we have stuck with this place. He is becoming more comfortable with her and is starting to progress well there. It has taken some stress off of our family, and with Dominic, which I am happy to see.

We have been working on Jacob gaining more strength in his upper body. Although he has high tone, he still is unable to hold his head up on his own and push up on his arms when laying on his stomach. He cannot roll all the way over due to his arms. Jacob also cannot grab any toys as he keeps his hands fisted most of the time. Over this past week we have seen him open his hands more and seems a little more relaxed, which is a nice change. We have been told that he most likely will never walk so we are hoping he can gain control over his upper body so he can move a little in his wheelchair. For us any progress is good progress for Jacob!

Also, one real nice perk is they allow me to go in the pool and do my own work out while Jacob is receiving therapy. I have been struggling trying to find time to work out so this is a win win! So as of right now Jacob receives aquatic therapy twice a week and in-home therapy once a week. Our hope is that all of this early intervention will increase some functionality for him later in life.

Thought we were on to something

At Jacob's neurologist appointment last month the doctor decided to send a sample off for genetic testing. Polymicrogyria is usually caused by genetics, infection, or some sort of vascular event. We still do not know what caused Jacob's brain malformation so the doctor wanted to try another avenue for answers. Going back to when Jacob was born, they were going to test the placenta for various infections, genetics, etc. Well, the hospital "accidentally", or carelessly when they explained what happened, threw out my placenta even though there were several orders for the placenta to be sent for testing. That is a whole other story within itself that angers me just to think about it. Instead, we are chasing our tails now figuring out how and we most likely will never know. They did as many tests as they could while he was in utero but they came back inconclusive. They were hoping the placenta would've given us the answer but instead we are left doing a bunch of tests now after he is born while poking and prodding at him :(

So, back to the genetic test. We received a call from the neurologist last week that the results came in. He wanted Shawn and myself to both be there. They always leave us hanging with messages like that and waiting to meet them in person a week later. So last week and weekend was again, long and drawn out. Today was the day to hear the results. Only two areas came back in question when it came to the genetics. These two areas dealt with epilepsy and not with Polymicrogyria. There was only a moderate level that there was a genetic concern with these two genes. Shawn and I were asked to give a sample to go for testing to see if we carry this gene. If we both do not have this gene, then there may be some concern. If one of us, or both of us, carry the gene then there is no concern. The neurologist does not feel that the results of Jacob's genetic test led to him ending up with Polymicrogyria. So again, we are left with no real answers.

It's days like these that become so frustrating. We have gone through many tests over the course of this year. Every time, no matter how bad the test, I would silently hope that it would come back positive just so we could have a concrete answer and maybe a concrete plan of treatment and prognosis. Today, I truly felt like we were going to have some answers. But in the end, nothing. They say 50% of the time you will never know the cause. I really feel that this may be the case. If anyone knows me I am not good with dealing with the unknown. So this whole process has been tiring and trying. Oh well, back to the drawing board!

Optometrist Appointment

We took Jacob today to his optometrist appointment. The neurologist recommended that we take Jacob to check his eyesight. Jacob has made little eye contact and does not track many objects. He will be 6 months in a few days and has yet to notice our dog, Diesel. And going off of the name, Diesel is not a little dog. He is our 100 lbs. silver lab and hard to miss! Also when we go to his neurology appointments the doctor will do several assessments to check his vision and Jacob usually just stares off at the wall. I will say though in the past couple of weeks it does seem as if Jacob has made a little more eye contact with us than ever before and can track a toy for a few seconds. Baby steps, right?!

Anyways, back to the appointment. The doctor dilated his eyes and looked at his optical nerves and a couple other structures of the eye. She noted that they all looked great and appeared healthy. She did state that when babies are developmentally behind, their vision can be delayed as well. This may be the case for Jacob. The doctor also stated that after doing a quick assessment and looking at his MRI that he may end up having issues with his peripheral vision and processing. It is too early to tell with this. Jacob will go back when he is one year old to look into this further. And also during the assessments Jacob was a little ham and would give his gummy, drooly little smile at the tech and doctor every time they were trying to get his attention. Of course he would all of a sudden start to interact with the doctor today! Stinker!

So the good news is she feels he can see something. How much and how he processes it, time will only tell.

Happy Halloween!

Dominic has been waiting for trick-or-treat night for almost a month now. He was so excited the night had finally come, even with the lousy weather! He was, once again, a fireman this year. Jacob on the other hand did not care for Halloween or dressing up. I think this picture pretty much sums it up. As Dominic would say, "Happy Halloweenie" everybody!!