Update for March 2013

Well the last few months have been a little crazy trying to get adjusted to running around so much. Now that we’re getting in to more of a routine its starting to get easier. If I don’t work we only have $50 a month for everything – groceries, gasoline, etc. We’re really lucky because most of his therapy is provided for free but we were definitely not prepared financially for having a child with special needs. Between the extra cost of formula (Max isn’t able to eat and we buy organic because I really don’t want any extra chemicals in his body considering his body has enough obstacles to contend with), the extra gasoline for running around, the extra bribery items for Milan (say what you will, but a tired 3½ year old sometimes just won’t cooperate unless there is a big enough incentive and mommy only has so much patience since she works at night), and the more often than I’d like prepared meals (either from restaurant or grocery store) I really wasn’t prepared for the extra hit on our expenses.  I can’t even imagine what it’d be like for us if there weren’t government sponsored programs to help us. We’d truly be destitute.

Max has physical therapy (p/t) twice a week, occupational therapy (o/t) twice a week, feeding therapy twice a week (I know this normally just under the O/T but Max has pretty severe issues with feeding so he’s been approved for additional therapy that focuses solely on feeding) and infant stimulation once a week (its technically 2 sessions at one time). I’ve managed to get it all to fit in Mon-Fri. But the one thing that has been hard to incorporate on a regular basis is the DNS. It only takes 10-15 minutes for me to do it at home but it is hard to find 10-15 minutes sometimes!

I do find that when I can do the DNS exercises at night right before Max goes to bed, it seems to have a better effect (although sometimes Max doesn’t sleep as well – I think because his brain is still working too much). I have also found that if I do it too regularly it doesn’t seem to have as great of an effect. Or maybe it does and its just not as noticeable if I do it more often.

Either way, he’s improving a little bit all the time. Every week our p/t therapist is amazed at how much Max has improved over the previous week. Its hard to say what exactly is working the best but I know I don’t want to change anything up too much since there is steady improvement.

If only the improvements were some of the big milestones. He can roll all the way over now, but he won’t because he REALLY does not like being on his tummy. He still can’t sit up unassisted – well, technically he can sit up but when he gets excited he flings himself backwards so he still needs to support to keep him upright. We finally splurged and bought a used Stokke Tripp Trapp Highchair with the baby set and I’m so glad we did. He definitely sits better in this than anything else we have.

Another super simple thing we got that has helped a lot is the Leachco Wrap Strap Anywhere Safety Strap, Red. Its such a simple thing but we’ve used it lots of places, not just in the shopping cart. And its so small that it fits easily in the diaper bag so I always have it with us.

One of the most important things that has happened is that both my husband and I are in a good place with the situation. If given the choice I will always want Max to not have brain damage, but since that’s not a choice I really don’t think about it. This is our life, and this is our challenge as a family. Its not the end of the world and we’re so lucky that there are so many resources available to help Max. Max is a really happy kid, he’s a hard worker and is improving. Seeing your kids happy is really the only thing that matters, everything else is just circumstance.

Posted in Cerebral Palsy, Personal

Max has ear tubes now

After a series of tests, Max had quite a lot of fluid build up in his ears. So he went through the fairly painless procedure of getting ear tubes. I was amazed at how quick the procedure actually is. The longest part is just waiting to get it done. The procedure itself only took about 20 minutes.

As soon as Max woke up, it was clear he was hearing a lot better. He was looking in different directions when he heard different sounds.

Its amazing how far we’ve come with medicine yet in some areas we’re still so far behind.

Ear tubes are a magic bullet for hearing. Just wish there was a magic bullet for helping the brain!

Posted in Personal

Happy 1 Year Little Max

A year ago today was one of the worst and best days of my life. We came so close to losing Max during his crazy birth. I’ll never forget the moment when the doctor put Max on my belly and he was lifeless and purple. NOTHING can prepare you for a moment like that. And it is something that you just can’t forget.

But luckily in our case, I also got to experience the tremendous joy that comes when you see your child being brought back to life.

I am so lucky to have him in my life. He is so incredibly sweet and happy. He constantly makes me smile.

I’m amazed at how determined he is … even at his young age. He rarely gives up (of course if he’s tired and hungry its a whole different scenario). Its a good thing because he definitely has a whole lot of obstacles ahead of him.

In one year, being Max’s mommy has taught me so much. One of the biggest lessons I have learned is to live in the “Now.” It was something I always wanted to do and now I am forced to learn how (although I really wish I had to learn this lesson in a different way). It is impossible to move forward when you are thinking about the past or the future or the what ifs. The only way to get to the next step is to look at where we are at that exact moment and go from there.

Thank you Max for being so strong and helping me to be strong right along with you.

I love you Max!

Posted in Personal

Welcome to Holland

During Max’s therapy session on Monday, the therapist stopped and asked me how I was doing with everything. I told her that I was doing surprisingly quite well. I seem to have settled into the acceptance of everything.

She also asked if I have joined any support groups. I told her no. Its not that I have anything against them (I have been a part of several throughout my life – some of which have definitely helped me to be the person that I have become), but I’m living in a hopeful yet realistic state. I don’t want to go to a meeting and hear about another child that is doing exceptionally well… that would make me sad about what Max isn’t able to do and I know I would focus on what he isn’t doing. After all, he’s making progress every day. The progress isn’t fast but its steady. I also don’t want to hear about any kids that are doing worse than Max for fear that I will start focusing on what could go wrong.

I’m taking it day by day.

Then she asked me about “Welcome to Holland.” What’s that I ask? Its an awesome short essay by Emily Kingsley. Its such a powerful and concise read. She really hits the nail on the head.

So if you’re wondering what its like having a special needs child, please take the time to read it (my husband read it and he almost never reads anything).

Welcome to Holland by Emily Kingsley

Posted in Personal, Special Needs

We started with DNS for Max

When we learned that Max probably had Cerebral Palsy (CP) I made it my mission to learn about as many different techniques, therapies and treatment plans as I could. I knew there were a lot of programs and amazing results for stroke victims so I figured there would be lots for children with CP since its basically the same thing (an injury to the brain that controls motor function). I was surprised to find that there aren’t that many. The majority of the mainstream (medically accepted) practices just focus on the muscles and movement. I was surprised that there weren’t that many that focus on brain rehabilitation. CP is a brain injury. Yes it affects the motor movements, but its a brain injury.

Eventually I started directing my searches for neuromuscular therapies. I discovered one that looked promising. Its a therapy approach called Dynamic Neuromuscular Stabilization. It is a fairly new method that is primarily used in sports rehabilitation. It was developed by Dr. Pavel Kovlar at the Prague School of Rehabilitation in Prague, Czech Republic.  Long story short, its kind of like combining reflexology, yoga, accupuncture and neuromuscular science. The focus is to get the body in alignment, utilize reflex points to initiate proper muscle contractions (stimulate the movement control centers of the brain) thus resulting in the stabilization of the body.Since its from Czech, there aren’t a lot of places utilizing this approach and I couldn’t find any testimonials for children. I bookmarked it but left it at that.

Randomly, one of my new mommy friends’ husband is a chiropractor but had started going in a new direction. He was pre-med but he never wanted to be a surgeon. Instead he found the non-traditional therapies interesting and was looking at being a bridge between modern/western medicine and conservative/hollistic. She passed on his info to me. Low and behold he is getting trained in DNS!

We were fortunate enough to start talking right when one of the specialists from Prague was coming to town to teach a seminar on DNS. He set up an appointment and the instructor met with Max. She gave him his first therapy session.

I was skeptical but hopeful that this could help Max. During the first session, I saw Max use the muscles in his shoulder in a way that I’d never seen before. This is HUGE! Max always brings his shoulders forward not up and back. For the first time, Max was moving his shoulder blades down. This is a precursor to being able to lift his arms up.

The next day he was holding his head up longer (like significantly longer) when he was in tummy time. During the week we heard some Baabaa and Bebe’s! Is it the DNS or was it coincidence? I don’t know but I do know that I won’t disregard the DNS.

He’s had 2 sessions so far, but just like the traditional therapy that he’s getting, the main purpose is to show me how to do the exercises so that I can work with Max every day. So for the last two weeks, Max does one day of traditional therapy, next day DNS and I’ve been giving him a break on Sunday.

Last week when we went in to see the physical therapist she couldn’t believe how much he had improved.

Two days ago, Max started lifting his hands up when I go to pick him up. Mind you, he’s not lifting his arms way up over his head but he’s lifting his arms up not just out! Its such a wonderful feeling to see your little one lift their arms up for you to pick them up… especially when you know how much work goes in to that movement. I’m so proud of my little man for everything he is accomplishing!

 

Posted in Cerebral Palsy, Personal

Refrigerator Organization Update

Thought I’d give an update on my refrigerator organization. You’ll be happy to know that its STILL ORGANIZED!

I really am quite surprised. I’m good at keeping things organized, but I have a toddler and a husband and they have managed to keep everything organized too!.

Biggest areas that surprised me:

  1. Leftover shelf. I thought this was never going to stay like this but it has. Its been so easy to keep my fridge cleaned out on a weekly basis. I’ve been writing the dates on the leftover containers either with markers or dry-erase crayons that I keep in our utility drawer (aka junk drawer) in the kitchen. A couple of times, the leftover shelf got way overloaded. But the cool thing was, I didn’t have to dig through the fridge to see if anything was lurking in the depths and becoming a science project. Everything was right on the shelf.
  2. Meat bin. Seems simple but there have been a few spills and having all the meat in a plastic container rather than the drawer has made clean up easier and thus not avoided. Simple idea, big pay off.
  3. My son’s section. Milan loves being able to go and get his snacks on his own. And when I remember to cut up the fruit and put it in containers ready for him he eats it first. He goes every day and gets his vitamins… and puts them back! If we’re running late (which is almost every day) he’ll often grab his own snack for school because he can. If you have a toddler/child/big kid and don’t have a section set up for just him/her, I highly recommend doing it.
Posted in Organization

Physical Therapy Eval today

Max had his physical therapy evaluation today. It went well. It was basically a meeting to get the therapist up to speed with where Max was at.  One of my favorite questions she asked was what do you think Max is really good at and what do you think he needs help with. I liked this because from what I’ve read, its important to take an approach that stems from what the child CAN do, not focus on what the child can’t do.

However, since it was mostly a get-to-know the patient meeting, that meant I had to go through the story of his birth again (randomly, I met with a friend this morning who didn’t know the complete story and told her about it, too). Therapist was happy that I had remembered so many details. I really liked her and Max was happy and playful.

Unlike the neurologist, she said she was happy to see him in at such an early age. She said she normally doesn’t see kids with such a high level of social aptitude until there much older – usually around 2. I guess it all depends where you’re coming from.

She gave us a couple of simple neck exercises to start with.

The specialist we had seen back in early December had stated that it was time for Max to move into a crib and out of the bassinet. The therapist agreed. She said its super important for Max to move as much as he can right now on his own. So if he wants to practice rolling over in the middle of the night, he should have more space to do it.

So now I guess its time to either move the crib out of Milan’s room into our room or bring up the pack-n-play. Why our room? Max has issues swallowing correctly so occasionally he chokes on his own saliva. There have been a handful of times (mostly when he’s had a cold – like now) that he really choked. He may have recovered easily without me there, but of course I have been there to pick him up and pat his back to make sure he can breathe okay.

The therapist said the pack-n-play would be sufficient but I’m kind of against using those on a daily basis. They’re not really meant for it and I know that I sleep better on a mattress rather than a floor. Milan slept a couple of hours more each night as soon as we moved him into the crib. I guess I kind of answered my own question didn’t I?!

Posted in Cerebral Palsy, Miscellaneous, Special Needs

Its official – Max has Cerebral Palsy

If you’ve been reading my blog, then you know that we recently found out that our son, Max, has global developmental delays. Today, we went and saw a Neurologist. She confirmed everything that we thought, Max does indeed have Cerebral Palsy. He has Spastic Diplegia which means that it affects his legs.

I had thought he had spastic hemiplegia (where it affects one half of the body) but he does not. This is good and bad. The good news is, chances are higher that he does not have cognitive dysfunction… yeah for that. But it means that walking is not something we should even begin to think about until he hits some more of his other milestones.

The Neurologist was amazing. She was kind, gentle, knowledgeable and frank – everything I want in a doctor. Our meeting went a lot longer than expected but that’s because I had so many questions and she was willing and eager to answer all of them.

Obviously, I’m not a doctor but I have a mind for science and math as well as my love for research. Thus, I’ve learned A LOT during the last few weeks since we got the initial diagnosis. OF course, there is so much conflicting information it was nice to sit with someone that really knew what she was talking about. When I asked questions she didn’t just give canned or dumbed down answers, she went a little bit into the science which was great for me. We went over what was discussed with the other doctors as well.

One of the big things I learned about today was why Max is having trouble eating. I thought it was because the CP affected the left side of his body, but it is actually because Max’s neck muscles are so weak. When you think about it, its amazing that we were able to breastfeed at all considering the condition of his neck and jaw muscles. Max definitely has trouble eating correctly when he’s tired. Breakfast is pretty clean. Dinner is VERY messy!

She recommended getting as much physical therapy as possible for Max. Probably the most disheartening thing about today was learning that Max should’ve been getting therapy since he was 4 months old. I feel some guilt coming on… You see, when Max is older, I’ll never know if Max’s condition would’ve been better if we had gotten him in earlier. I knew that something was wrong. Eli (my husband) knew that something was wrong. We didn’t admit it to each other until a few months ago. We kept hoping that Max was just going at his own pace and that he’d catch up.

If only I knew then what I know now. But I didn’t and I can’t go back and change it.

What I can do is be the best advocate I can for my son. Learn as much as I can so I can help him out as much as I can. Encourage him to be the best he can be. Ask for help when I need it. Shower unconditional love on him. In other words be his mommy.

Posted in Cerebral Palsy, Personal, Special Needs

Max failed his hearing test again

Never thought I’d be so happy to find out that my son can’t hear. Why you might ask? Well, this means that there is a possibility that the reason he isn’t babbling correctly is because he can’t hear!

Turns out, he has fluid in both of his ears. So despite him passing previous tests, now both of his ears have fluid and thus problems. Poor baby. Who knows how long this has been going on.

So now the next steps are to get him in to an Ear, Nose, Throat specialist as soon as possible. Hopefully, it can be fixed by ear tubes or something else relatively easy.

I’m quite hopeful that this is the beginning of Max’s path to being able to speak.

Posted in Personal, Special Needs

Merry Christmas – 2012

Well, Christmas is finally here. After a whirlwind of a month, we finally got into the Christmas spirit on the 23rd. We put up a tree, put up lights, hung our stockings and finally let the warmth of Christmas surround us.

Normally, I’m overfilled with joy and you can’t keep a smile off my face. But this year, with the news about Max, its been a little more difficult. I really have moved into the acceptance stage and am learning about what it takes to be a mom with a special needs child. I’m not the first, sadly, won’t be the last.

One of my biggest heartaches from all of this is for Milan. He’s such a GREAT big brother. He looks out for Max so much as it is. But it brings tears to my eyes nearly every time Milan talks about how he can’t wait for Max to grow up so he can run and play with him. At this point, we’re hoping he’ll be able to talk let alone walk. Running? Well, that seems like too much to ask for at this point.

Another thing that bothers me so much is how hard it is to look at my friends’ children’s photos. I have quite a few friends with babies that are just a little older or just a little younger than Max. Seeing them in photos doing the things that Max is behind in is hard to see. The reason it bothers me so much is probably not what you think. Its not that Max isn’t doing those things. Its because of the sick in my stomach feeling I get when I look at a picture that should only bring joy. I really am happy for my friends… just wish I could be experiencing those same carefree feelings you have when you look at your baby and see how much they’re growing. It feels you with so much pride.

Nonetheless, I really am happy its Christmas. And even though there is a twinge of sadness when I see some photos, I’m really truly happy for being surrounded by such amazing people in my life.

Merry Christmas everyone!

Posted in Personal