Sunday, June 24, 2012

Keto Bucket List

Tomorrow we got to the hospital for a 3 day admission to get Matt on the Ketogenic Diet, so this weekend has been Carb Fest 2012.  We wanted him to be able to have all of the stuff he loves before starting Keto because he might not get to have it again for a very long time if we can't find a low-carb, high-fat equivalent.

Friday we got him Mac and Cheese from Kentucky Fried Chicken, which is his absolute favorite thing ever.  One bite and the kiddo couldn't stop smiling, he was in total cheesy, carb-filled bliss.  Saturday we got him a cupcake, which he has never had before. He liked the initial bites of buttercream icing, but quickly lost interest. For dinner that night we got New York style cheese pizza, a food he just recently was allowed to start having. He was so excited, he was smiling and dancing in his high chair the entire time. This morning, he got to have pancakes for breakfast. Out of all the yummy stuff he got to eat this weekend, my mother-in-law topped it all today with her spaghetti and meatballs. I am praying that the dietitian can help us find an equivalent to that meal, because the kiddo could live off her spaghetti and meatballs.

If you had one weekend to eat anything you loved before starting a super restrictive diet for possibly 3-5 years, what would be on your bucket list? Why?

Thursday, June 21, 2012


Last week, I had to suck up my mommy hurt and finally apply for a disabled parking permit for him. Matt's neurologist is very accommodating and during our appointment last week were he diagnosed our little man with Cerebral Palsy, I asked for a script to get him into the wheelchair seating clinic and they filled out the required forms for the permit as well. It is well known in my family that I have been very hesitant and vocal  about not applying for disabled parking for Matt. I had my reasons, one being that I felt like I would be abusing the privilege of having disabled parking and taking a spot away from someone who really needed it. And when he was still small, it was true that he didn't need it. It was also one of the few ways I was able to deny Matt's developmental and physical delays. Now that he is older and so much harder to get in and out of the car and into wherever we're going, I've had put whatever I am feeling aside and do what needs to be done for him.

 Earlier this week we took Matt to get fitted for a wheelchair. It has been very hard for me to accept that we have gotten to the point that he needs a chair, that yet another one of my plans and dreams for him was changing. Facts are facts: he rolls over, but will not tolerate being on his stomach long enough to push up on hands and knees, he isn't crawling, and sadly, my baby is getting too heavy to carry around for long periods of time.  I still have hope that someday Matt will be able to stand independently and even walk. He has already made progress in the standing department, surprising his two therapists and I by popping up off a bench he was sitting on during a Occupational/Speech co-treat session. I had to look at the benefits for him, that it would give him more independence and maybe get him a little more interested in the world around him rather than having someone hold him all the time.

The day of the clinic, Dad had to take over kiddo duty because I was stuck in bed with a virus. I definitely was not fit for public consumption. I felt so guilty because I wanted to be there for Matt,  but his rehab center is full of kids that are medically fragile so I wouldn't want to expose them to what I had going on. From what Dad told me, it was a pretty simple process, a wheelchair fitting team comprised of an Occupational Therapist, a Physical Therapist and a rep from the wheelchair measured Matt and then had him sit in a few different models to see what would work best for him and what features they would add. The only requests we had when it came to the chair was that it recline so that we could lay him back when he got tired because he has limited head and trunk control. We will get his new wheels in September. I can't wait to see how he reacts to his new view on the world :)

Monday, June 18, 2012

Introduction to the Ketogenic Diet

Last Thursday I met with the Pediatric Dietician who will be in charge of getting Matt acclimated to the Ketogenic diet. My head is still reeling....SO MUCH INFORMATION!!  Just for a little background the Ketogenic Diet is a high-fat, low-carb diet that is used to treat difficult to control epilepsy, mostly in kids.  The body goes into a kind of starvation mode due to the absence of carbs and sugars that are usually used to fuel the body. As a result the body starts to use the fats in the body for fuel instead. This was a primary form of treatment before anticonvulsant medications were developed. The diet is effective in controlling the seizures in half of the patients who try it. Matt is currently experiencing two kinds of seizures according to his most recent EEG--Salaam Spasms and Absence seizures. After a discussion with his neurologist about possible treatments with medications and a lot of online research we felt this was something we should pursue.

As soon as I started talking to the dietician, I felt more at ease. She gave me a packet of information to take home and started explaining the process we would go through to get Matt to the process of ketosis, where the levels of ketones in his body rises. Ketosis is supposed to reduce the frequency of seizures. I brought in a sample menu of things that Matt might eat in a typical day--scrambled eggs, farina, chicken nuggets, macaroni and cheese and Goldfish. I even had to make a list of his daily medications because they may contain carbs or sugars. She said that she would start looking for recipes that we could use that would still allow him to eat some of his favorite foods and look for replacements for those things we couldn't cook for him.

I don't think I fully realized how strict this diet was going to be until I sat down to talk to her. She stressed how important it was that Matt not eat or drink anything he wasn't supposed to and that we measure everything carefully. I also learned that Matt will no longer be able to take liquid medications because of their sugar content. Instead, he will be taking tablets or capsules and if possible injectable antibiotics so that ketosis doesn't get broken. If ketosis gets broken, say I don't measure part of his meals correctly, he has a very real possibility of having a seizure soon afterwards.

I have my shopping list of things to buy and some required reading before we're admitted to the hospital next week. I'm nervous, but optimistic that this diet will do amazing things in Matt's life.

Tuesday, June 12, 2012

First Day of School!

Today was Matt's first day in school! We were so excited for him, and more than a little nervous too. He has never been away from us unless my in-laws were babysitting so we had no idea how well he would do with strangers.

We got to the school early because I had paperwork to turn in to the administrator and I need to give Matt's teacher his Diastat pen in case he had a seizure. I am a big fan of this school. Since it is a charter school that mostly deals with students with special needs, the medical staff is all CPR certified and trained to give Epi-pens and Diastats if needed by the students. Matt's class size is very well controlled, there is an adult for every 3-4 students, so I felt comfortable that he would get adequate attention. The classroom is filled with adaptive seating for those students like Matt who cannot sit or stand on their own, so I didn't have to worry about him being laid down somewhere and get hurt. When come in the classroom, wash his hands (not only to kill outside germs, but also because of food allergies of other students) and sign him in.

The room was bustling with drop off activity this morning, parents leaving meds and food and signing forms before kissing their kids goodbye. One of the aides came up and took Matt from me and brought him to the carpet with the other students to read a story and play with some toys. I felt my throat close up and I was ready to start bawling about leaving my baby. He was a little fussy at first, then he noticed all the activity around him and started studying the other kids. This is what I hoped for when we first enrolled him-peer interaction. Within a few minutes he didn't even realize that we were still there and Joe took me by the arm and lead me out of the room, not before I made his teacher to promise to call if he needed me. I didn't cry when I left, but I wasn't ecstatic either. I missed my little boy.

I dropped off Joe at work and went to Target since I didn't want to go home alone and that I wanted to be close by if the school called. I never go anywhere alone, and usually the only time I leave the house is to take Matt to doctor's appointments or therapies so going to Target was a luxury. I felt like something was missing the entire time I was there, I checked to make sure I didn't lock my keys in the car, that I had my wallet and my shopping list. I didn't realize until about 30 minutes later that I had been walking around the store with my cell phone in my hand, just in case they called.

Sure enough, about 45 minutes before I was supposed to go back and pick him up, his teacher called and said that he was upset and wouldn't stop crying and would I please come get him. When Joe and I got back to the school he was sitting in his teacher's lap and whining a little. Joe picked him up and the crying stopped instantly. I grabbed his backpack and sippy cup and said goodbye to his teacher and thanked her for calling us. As soon as we walked out the classroom door, my little monkey turned his head and smiled at me. He missed me as much as I missed him. The first day was hard, but I know it will get easier as time goes by. I can't wait to see what he accomplishes in school.

Monday, June 11, 2012

Information Overload

Today was a big day for us. We saw our neurologist today because the kiddo had an abnormal 24 EEG last week and they wanted to discuss medication options with us. When we met with the doctors we learned that he is now has what is being called Mixed Seizures, meaning that he is having two different kinds of seizures. We knew about the Absence seizures because we have seen him have them. The second kind I had never heard of before. It's called Salaam seizure/spasm, and it looks like he sharply jerks his head down to his chest when he is having one.The doctor compared them to infantile spasms, but not as severe. After they told us what it was, he had two episodes we noticed today. They gave us two treatment options, one to give him an experimental drug that can cause blindness (he already has Cortical Visual Impairment) or giving him a different drug (don't know which yet) and starting him on a ketogenic diet. We decided to go with option # 2 for now and see how he does. He depends so much on his peripheral vision because of the Cortical Visual Impairment and the idea that he may lose it because of an experimental medication is unthinkable to us.

While we were there I brought up with his neurologist that his pediatrician mentioned the possibility that Matt might have Cerebral Palsy at our last well child check. With all his health issues, we have never been given a formal diagnosis that might explain everything that he has going on--seizures, microcephaly, genetic abnormalities on chromosomes 3 and 5, developmental delay, hypotonia, CVI and bilateral hearing loss. From everything I have read about CP, it sounded like some of Matt's issues could be classified as Cerebral Palsy. His neurologist agreed with me and added the formal diagnosis to Matt's medical records. As weird as it may sound, hearing the diagnosis was a relief to me. For the past two years, we have seen numerous specialists and therapists and it felt like all they did was heap all those other diagnoses on my little man without actually giving a name to all that he was experiencing. The CP diagnosis changes nothing about Matt. He is who he is and and his health issues do not define him.

So much information to process today, but I'm feeling confident that we made the right decisions at this time.

Sunday, June 10, 2012

Chocolate Pudding Therapy

In our latest attempt to broaden the kiddo's culinary horizons beyond macaroni & cheese and spaghetti & meatballs, we decided to throw caution (and possibly our beige carpet) to the wind and try to teach him to eat with his hands. This has been a long fight due to his developmental delays and issues with feeding and acid reflux, but we got the go-ahead to start adding more age appropriate foods after his most recent OPMS swallow study.

One food suggestion given to his by the Occupational Therapist and Speech Therapist who observed him during the swallow study was to start giving him a puffed cereal snack so that he can learn how to chew crunchy foods and get more texture in his diet beyond chewy pasta. These were a HUGE hit with him! We started sprinkling some on the tray of his high chair so that he could grab them and feel them. His Cortical Visual Impairment also made it difficult to see the puffs, so his visual impairment teacher recommended that we mix them with the multicolored Goldfish. Big Success! He will scoop them up and hold them in his palm, but like all other foods, utensils, and baby bottles, he will not bring them to his mouth.

Finally in desperation I had the idea of letting him put his hands in something and then put his fingers in his mouth. After some discussion with his therapists we decided to go for it. As you can see, he was a very happy boy and even brought his fingers to his mouth a couple of times, most of it ending up on his face. This like everything else about our sweet boy will be a work in progress until he gets the concept. The look of pure joy on his face made the clean up worth all the mess.

Saturday, June 9, 2012

Here I Go....Again.

I still haven't figured out this whole blogging thing. I'm hoping with a more unique name and hopefully more time to write that I'll eventually find my audience. This whole "Special Needs Parent" thing gets pretty lonely sometimes. I have my facebook groups that I belong to, but I'm ultimately hoping to meet more parents who are members of this unexpected fraternity/sorority that we're all in.

So I will disable the original blog that I set up that has three posts and zero followers and try again here. Here's hoping it goes well.