Good cloner anyone?

Does anyone know a good human cloner out there? As you are aware I work 40 hours a week, with a 40 minute 1 way commute tacked on to that..so that equals 44 hours (I work from home on Tuesdays) that I am away from Tyler. We are BLESSED to have family take care of him 4 days a week. And when I say blessed, I truly mean that. Not once did anyone in our family back down from their offer to help us. Given all that was going with him, they still wanted to help us out and have their Tyler time. And we thank them every day they have him. But I stress at work the day he is in the care of family because no one seems to listen to what Tony and I tell them to do with him. Something to note is we have been told schedules and routines are very important for kids with visual impairment, so that is what we have done. Maybe not as well as we should, but let’s face it, working full time doesn’t allow that to happen. We have tried, are trying, our very best and expect others would follow our lead. Granted, we are the parents and all correct?

I find that I am the only one who talks to him on a constant basis. I don’t know what he can or can’t see so I try to let him know his world around him. If I am in the kitchen cooking or doing dishes, I tell him. If we are in the car, I describe some not all, of the cars and trucks around us. I tell him what roads we are getting on. I tell him when cars pass or house. I tell him what we are doing next. You get the picture. And it bothers me so much when our family members, including Tony at times, don’t do this. You can see the change in demeanor with him. He resorts to chewing on his shirt or curling up into a ball. He is being ignored and he knows this. Why they do these things, I don’t know. I have asked time and time again for them to do so, all while being told he needs silence every now and again. Now this doesn’t mean there isn’t silence with me, but not nearly as much as with them. I have asked for them to put themselves in his shoes. Lie on the floor with their eyes closed and see how it feels. Its scary. And uncomfortable. We have to be his eyes and ears and comfort. 

So if anyone knows a good cloner please let me know. I need to work as we need my income as well as Tony’s to live. But the older Tyler gets, the more frustrated I am becoming that people can’t just follow direction. I don’t expect my way to always be the right way. That’s not even close to the truth. But given that I am the one who has been to some clinics on visual impairment, I work with his vision teachers and other therapists, I am the primary contact person, I think I know a little bit about what I am requesting. I think I know my baby just as they knew their kids growing up. Is that an unreasonable request?

What is he thinking?

As I sit at the breakfast table, just Tyler and I, I can’t help but wonder what he is thinking. Not being able to communicate, with the exception of more and his own special sign for wanting a drink, I have no clue what he wants as he sits babbling. He does very well at self feeding but someone needs to be at the table with him as he throws his food at random times and getting his sippy cup back on the table upright, can be a challenge. But he sits here, so happy and so full of energy, I wish I knew what he was thinking. He laughs out of the blue, he reaches for me and smiles all while babbling. I agree with him, I tell him we can do that if he wants, thinking he is telling me something with such meaning. Ahh, to only get into that little head of his.

and there goes a piece of bagel flying through the air…….

Birthday Party Anxiety

In a little over an hour, we are heading to our neighbor’s house for a  birthday party for their son. He is turning 5. He is actually one of Tyler’s classmates and our families are close. While I love that we are included for some “typical kids” parties, I am filled with nerves because let’s face it, we are far from typical. Tyler can’t run around outside with the other kids. He doesn’t understand why he is going from our house to theirs. He doesn’t understand what is going on. The other kids recognize this. And while they are all super sweet and always say hi to him and let him feel their face for identification purposes, they run off to be kids. And its hard for me to watch this. Still 5 years later I long for my baby to run with his friends. I want him to be excited about gifts his friends are getting. I want him to play outside. I want him to say Happy Birthday! I am so grateful we have friends that do accept us for who we are. So as they say “beggars can’t be choosers.”

Milestones

While I am jumping ahead a bit in sequence, I thought it was important to post when Tyler hit some of his major milestones, to give those of you reading an idea what our life has been.

Smiled: 2 months old

Babbling: 3 months old

Eating rice cereal: 4 months old

Eating jar food: 5 months old

Laugh: 6 months old

Rolled over: 8 months old from one side to his belly.

Eating soft table food (potatoes, banana, etc): 10 months old

Completely roll over (Purposefully): 14 months old

Learned to chew: 14 months

Sat up independently: 1.5 years old

Crawled: 3.5 years..*Note he only combat crawls as he has limited use of his left arm due to CP

Talked: haven’t accomplished this yet. Only says “more” and not purposefully either.

Walking: started taking steps at 4 years 3 months with assistance. Currently still needs assistance. We are looking to get him a walker to teach him independent walking.

A lot of these milestones took him longer to reach given his visual impairment. He never had the motivation to try and crawl to a toy. He didn’t (doesn’t) have the motivation to try and walk to something he wants. In my research, a lot of children who have hydrocephalus, who do not have vision issues, reach their milestones about the time that they should. But having the vision loss does make sense as to why he isn’t.

The talking we are not sure if he ever will accomplish this. We don’t know if his brain can remap itself to allow him to do this. Its frustrating not only for us but for him as we don’t always know what he is trying to convey to us. My biggest hope, out of all my hopes for him, is that he can gain the ability to speak. Here are a couple cute pics of him achieving some of these milestones:

Thinking back

With Tyler’s 5th birthday approaching in 3 months, I can’t help but think back to his first days. I can’t help but think of what I did that could have caused all of these things to happen to him. The pregnancy was normal. Granted I had the all day morning sickness, and really couldn’t eat anything until the 6th month, but I didn’t have any other complications. I didn’t have high blood pressure. I didn’t have cramps. I didn’t have bleeding. What trauma could I have been through to have caused this precious little boy to suffer? These are questions I will never have answers to.

And with his 5th birthday comes mixed emotions. I think back to those days sitting in the NICU. Granted he was a 6lb 7 oz baby when he was born and didn’t need to be placed in an incubator. But oh, the wires that were attached to him. I remember just wanting to rip them all off and run out the door with him. I remember sitting there rocking him, and not wanting anyone else to hold him. I felt I owed that much to him that I needed to be the one to comfort him. I hated leaving because I felt like I was letting him down. Would someone be there the moment he cried? Of course they would. I learned that those nurses were, well are, angels sent from above. I could not do that job. I could not watch these tiny little babies suffer day in and day out. I felt like the annoying parent as I would call every couple hours, especially in the middle of the night, to check on him. I learned that a lot of parents called more than I did so I didn’t feel so bad. And neither should you if you are in that situation. It’s your baby. CALL. Call every 30 minutes if you can’t be there. Even if there isn’t a change, its reassuring to know he/she is ok.

So as the days wore on, my fear of him being there lessened, but oh did I long for him more and more. But I realize now that everyone was right when they told me I needed my rest and needed to get stronger so I would be ready when he came home. Those words at that time drove me nuts! How did they know what was good for me? How did they know what I was feeling?? All I wanted was Tyler in my arms safe. But he was safe. And he was growing. And he was getting the care that none of us could provide for him. And for that, I am forever grateful. And for that, I will visit the NICU on his 5th birthday to say Thank You.

Those beautiful eyes

May 19, 2004……Not only was this Tony’s and my 3rd wedding anniversary, this was a day we will never forget. Tyler had his scheduled 6 month check up with the ophthalmologist. I was at work so Tony took him. Just like with the shunt infection, I knew this wasn’t going to be a good appointment. Let’s face it, Tyler was 6 months old and hadn’t made eye contact yet. His little eyes fluttered back and forth. He couldn’t focus. It didn’t take a rocket scientist to figure this out. But what the actual diagnosis would be, was anyone’s game. Then I got the call from Tony at work. He was diagnosed with nystagmus, or the eye fluttering, CVI or Cortical Visual Impairment, and officially legally blind. My heart broke and I couldn’t hold it together at my desk. My manager at the time happened to walk by my desk and let me go home to be with my boys. I had no idea what any of these things meant. I needed to hug Tyler. I needed to hug Tony. Again, why are these things happening to Tyler? What in the world did I do to deserve this? My precious baby can’t see! Why??

I researched CVI and this basically means he can only see in quadrants. He doesn’t have the ability to see things completely like we do. This is a result of the brain bleed and the damage done to his brain. We were given a prescription for glasses. Glasses on a 6 month old! Ok, now this is ok to me as every member in my family, as well as Tony’s, wears glasses for one reason or another. This is perfect while trying to teach him that its fun to wear glasses. And by the way, have you ever seen anything so cute before:

With these diagnosis’, we were still in the “wait and see” mode. The glasses should, and have, slowed down the nystagmus. There is a noticeable difference when he has them on compared to when he doesn’t. The CVI was a completely different beast. In some cases it has improved. In others, it has stayed the same. The good news was Tyler’s eyes structurally didn’t have any issues. So if we could get the damage corrected in his brain, there was a small flicker of hope that it too could be corrected. The legally blind diagnosis would be with him forever, unless of course the CVI corrects itself. So we wait and see and continue to love him more and more for all that he is and all that he is teaching us! 

Side note, Tony and I did go and celebrate our anniversary the following Saturday, but couldn’t really enjoy ourselves as we were away from Tyler. We stayed over night at a hotel and were up and out the door at 8AM heading back to get Tyler. It was our first time away from him and with this bit of news, we just couldn’t bear to be away.

Therapy..therapy..therapy

Now that we were home for good, we started receiving Early Intervention Services. Given the amount of damage to his little brain he needed to be taught the basics..how to roll over, how to play on his belly, how to lift his head, as it was larger than it normally should be on an infant, so on and so on. We received weekly physical therapy, occupational therapy, speech therapy. While this may seem overwhelming to a lot of people, it was a blessing to us. These ladies came every week and took such good care of our little man. He resisted every time his physical therapy sessions rolled around, but that was only because someone was making him work. It was so nice to be shown little things that we could work on with him until the next session. And what a JOY to see the hard work pay off. I will list when he achieved his milestones in a bit. I cannot stress ENOUGH the importance of following through with the suggestions from Early Intervention gives. They are usually very simple things but in the long run mean so much for the child’s development.

Yes there were times when we would go WEEKS without having services. And that bothered me. But just like if the therapists were in a school setting, by being around so many children all the time, they were susceptible to illness. So there were weeks that one or all of them would not be available. But knowing the simple suggestions they gave us, we were able to keep up his progress and in some cases, achieved the goal they were hoping for.

Now that Tyler is in school, even though he does receive these same services there, I miss the weekly interaction. I miss having suggestions to work on. I miss having hands on experience. So while you may feel this is such an overwhelming issue, or a nuscience to have these people in and out of your house on a weekly basis, it really isn’t. Learn from them. Listen to their suggestions. In hindsight I do wish I didn’t complain about them coming because I did have my days where I just didn’t want them there even though it was good for him. I wish I could go back and take those thoughts away. There were times where I would cry and say “why can’t he be a normal little baby and not have to be forced to do these things.” All along knowing these sessions were the best things for him. Like I said, I long for those days again. So if you are having ANY of those same thoughts, hang in there. Your child isn’t the first to received the sercvices. They certainly won’t be the last.

Home again….

Well, after 2.5 weeks in the hospital, with a brand new shunt now in on the side of his head instead of the front and after being told he needed a smaller shunt NOT a larger shunt like we thought, we were able to take him home…AGAIN. Knock on wood, this has been his only shunt revision to date. At his last check up in April, we were told we are out of the woods for any more shunt infections. Now we have to worry about shunt malfunctions. Something else to worry about. Joy oh joy. 

What a difference having a new shunt made. He smiled and giggled all the time. Actually he still does. He is a very happy kid.

Happy to be home AGAIN!

3 weeks of fun

Besides the resevior that was protruding out of his tiny head, Tyler looked and acted like a typical baby. He ate, he slept, and he even played with a couple toys. I used to dress him in a couple different outfits a day. He was so cute. He IS cute. 

Tyler & Daddy at home

We had a scheduled appointment, on a Friday,with the neurosurgeon to check the size of his head. My mother came to the appointment with Tony and I. We arrived at the office and Tyler started crying…and didn’t stop..ALL WEEKEND! The doctor wasn’t satisfied with the size of his head and wanted to put a different size shunt in his head. This was something we were prepared for but were so sad. We have only had him home for 3 weeks. So we leave knowing we will have a call from the nurse to schedule our next surgery. 

As I said, he cried all weekend. I had this HORRIBLE feeing something was wrong. He wouldn’t eat. He would only sleep for 10 – 15 minutes at a time. He wouldn’t let us put him down. Then his fever started to spike. As all frantic new parents do, I called the pediatrician. They said the couldn’t see him until it reached 102 degrees! 102 DEGREES! Are you kidding me. So we sat and tried to console him as much as we could. Then Sunday night, he started to throw up. He was clearly displaying signs of a shunt infection. This couldn’t be happening. But it was. I just knew it.

Monday, since his fever did go up to 102, we went to see the pediatrician. He decided we should go to the ER to have him checked out “just in case.” So off to the hospital we go. I called my parents on the way and they met us there. The neurosurgeon came down and he drained some fluid out of the shunt to test for an infection. He was gone what seemed like hours. All the while, my little boy was still crying, throwing up, and trying to sleep when he could. I thought I was going to be sick but I was trying to hold it together. We saw the doctor come around the corner and I just knew what he was going to tell us. Sure enough his shunt was infected. He needed emergency surgery to remove the shunt, have his fluid drained externally for 2 weeks, then he would have another shunt put in. 2 more weeks in the hospital. I couldn’t believe this was happening.

Why couldn’t he have the normal life he deserves? Why couldn’t we have more than 3 weeks with him at home? Why couldn’t I protect my baby boy?? These and other thoughts did, and some still do, run through my head over and over again.

Tyler FINALLY comes home!

12/29/03…not only is this my brother’s birthday (he turned 24 that day), but it is the day Tyler FINALLY comes home. He spent 49 LONG days and nights in the NICU. He had 2 major surgeries while he was there. First he had a resevoir placed in his head to help drain the fluid and blood away from his brain. 2 weeks after that, he had his first VP shunt placed in his head. This helps drain the fluid to his stomach for the body to handle, as it normally should. He was able to leave without any medical equipment necessary. We didn’t need oxygen tanks. He didn’t need a G-Tube as he was slugging down a whole 120 cc’s of formula when we left. He didn’t require any monitors. He was able to come like he should have, 49 days earlier. We were both relieved and scared at the same time. Like most new parents, we stared at him in our house and thought “now what?” But those words had more meaning. What we were really saying is “We have no nurses to tell us what every little thing means. We have no nurses constantly monitoring his temperature and heart rate. Are these things we are supposed to do? When do we know to increase the amount of formula?” I know there isn’t a handbook for new parents. But there DEFINITELY isn’t one for parents of special needs children. Where do we go from here???