Wednesday, April 25, 2012

Unfair To Compare

As we sat eating tacos and refried beans for dinner (one of only a handful of meals that everyone in this house will eat) I placed a spoonful of beans on Gabe's high chair tray.  He went to town eating them with his hands and doing a mighty fine job at it.  Then I decided to give him a spoon and see how it went.  He quickly scooped up some beans and got them straight to his mouth.  Very little mess (until later when he "washed" his hair with them) and he was so proud.  And so was I.  Then I looked over and saw Anna- struggling to eat her food and spilling beans and meat all over the place.  It looked like a taco bomb had exploded in her place at the table and on the ground around her.  I sat and thought for awhile and my first thought was how sad it made me that Gabe is 1 and can easily use a spoon to feed himself and how at 4 Anna really still struggles with a spoon.  I started to get really sad.  Then I had a moment of perspective.  2 years ago Anna was not only not using a spoon, she was not really eating by mouth.  The bulk of her nutrition was from her Gtube.  It hit me like a ton of bricks-  it's not sad that she can't use a spoon well, it's a miracle that she can use it at all.  So I decided I have 3 choices:
  1. Remain sad that Anna struggles
  2. Be proud of Gabe's accomplishment
  3. Be proud of Gabe's and Anna's accomplishments.
Number 3 is where it is.  I must not compare.  It is not fair to either child.  Each child is a miracle of their own.  I struggle with this so much- comparing them, all 3 of them.  I must remember that even if they were all born perfectly healthy they would still do things on their own timeline.  Each one is a miracle!

Tuesday, April 24, 2012

A Sigh Of Relief

I guess I totally forgot to update about Anna's appointment and the pre-k development. Seeing Dr. Hernandez always makes me feel better. No matter how stressed I am he is able to put things into perspective and remind me how far Anna has come from where she began. He said that although Neurontin is not his first or even second choice of a drug for seizure control but since she was already taking it he thought it would be better to manipulate it first before trying anything else. If that did not work then we would abandon it and add a different medication. If that didn't work we would begin to discuss more drastic steps like neurosurgery. Luckily the medication increase is working for the time being. It took about 3 days and then Anna's personality seemed to return to what it was before the last seizure storm started. She is back to laughing and giggling and just overall being the silly girl we are used to. That whining, crying, sleepy kid went away and I am so thankful. She was about to push me over the edge and I know she felt bad too. I saw a sign at the school about the "Pre-K Round-Up" so I called to get the details. It turns out we will have to pay $100/month (which is WAY CHEAP) for Anna to go to Pre-K in our district. It is a 1/2 day Monday-Friday program. There will be space for her and I am so glad. I was able to mark that off of my list of worries also. I'm thinking the afternoon program will be best for her because her tegretol knocks her out in the morning. I know that when she starts full day school this will not be an option but I'll take it while I can. So yay for good news!!

Friday, April 20, 2012

Serious Business

I must admit that prior to having a kid with a peanut allergy I did not realize the seriousness of it.  I know there must be other people out there that feel the same way.  Today, someone ate a peanut butter cookie and then picked up Gabe without washing their hands first.  These pictures were taken 4 hours after the exposure and also after doses benadryl and zyrtec.  Keep in mind he did not ingest it but was merely touched by someone who had touched peanut butter.

He had these hives everywhere he had been touched.  I could only keep him still long enough to get these couple of pictures.  Now just imagine if he had ingested it and that happened on the inside.  Take it from me folks, peanut allergies are serious business!

Tuesday, April 17, 2012

The Sucker Punch

Some of my favorites from Easter

As always, I have intended to sit down and write each night for the past week or 2 but it just doesn't happen. I so want to but my body is tired and when the kids go to sleep I soon follow. There has been so much going with Anna, or what feels like so much, that I'm not really even sure what is bothering me the most. A couple of weeks ago Kenneth forgot a few different times to give Anna her morning dose of tegretol. Although I hold him ultimately responsible, I also know that Anna is becoming more and more resistant to taking her medicine and that does not make things any easier. We used to be able to say in the morning, "Anna, go take your medicine" (we always set it out in a medicine cup the night before) and she would just do it. No questions and no hesitation, she just did it. Now, you have to really stay on her. She will tell you she took it when she didn't or she will fuss and cry and tell you how much she doesn't want to take it. It is not easy being home with the kids and I know Kenneth is doing the best he can. I am so lucky and blessed to have him as a husband and the kids to have him as a father. I know we all make mistakes- I just wish this one would not have involved Anna's seizure medicine. I assume after missing a few doses that her tegretol level came down and we lost the seizure control we have had for 6 or more months. Although it troubled me and I felt sorry for her I just knew that as soon as her level stabilized we would be good to go again. In the mean time it was not fun. She was just not herself and you could tell she knew it too. It was heartbreaking. After 3 or 4 days went by like this and things were not getting better (including a seizure during her soccer game) I decided it was time to do something different because we were not getting the control back that I thought we should. She had a tegretol level drawn and the neuro's office called me today and they cannot increase her tegretol anymore so they are now going up on her neurontin. She will no doubt be a zombie for days now. I guess if it gains us control it will be worth it. I just feel bad for her. Then the special ed people with the school district called yesterday and Anna has, based on their testing (which correlated perfectly with the questions I answered- my score was the same as theirs), been officially tagged with the label "cognitively delayed." That was like a sucker punch to the gut. For some reason I've learned to be OK with speech delay or memory deficit but adding all of that up to cognitive delay is so much harder to swallow. I have been nothing but nauseated since hearing that. I know it is just a label and it does not change Anna but it still hurts. It hurts a lot. On a positive note though, it does open up many more options for us to get her the help in school that she will need so hopefully soon I will be able to let the hurt and sadness go and focus on the good this will bring. We have 3 different options we are looking at for pre-k for next year. The first is to send her to public pre-k. This is the best option except it is a need based program and again, we make too much money. If there are any slots left after the need based kids then maybe she will get a place there and she will receive services there. Our next option is private pre-k ($$$$) and they will come there and provide services. A good option, but expensive. Our third option is to send her to PPCD (pre-k program for disabled children) 3 days a week. I was assured she would be too high level for that program and now they say she qualifies (another one two punch). The whole medicaid buy in thing that I thought was going to be the answer to some of our medical money woes has turned out to be a total pain in the rear and maybe not even worth trying to get. It is not as simple as they make it sound and certainly not as beneficial as they make it sound. So for now we will continue on a payment plan with Cook Children's to pay out the $1000 that the insurance does not cover to get the neuropsych testing done on May 1 & 2. Again, she's a million dollar baby. I am so completely overwhelmed right now. I'm back to just wanting to crawl in a hole for a little while. But I know it will all be there when I come out of the hole so I might as well scratch that idea.

Carly and Kenneth had been arguing a lot and that was stressing me out too. Everyday I came home from work to find them arguing...again. I expressed to both of them how much I needed it to stop. I am so proud because they have worked together to fix the problem and things are so much better. Their biggest problem is that they are just alike. If we can make it to this Friday, Carly will have perfect attendance for 6 weeks- a first in her school career. She is very excited. She broke her glasses last Tuesday, in the middle of Anna's seizure, while she was playing on the monkey bars at the soccer field. I was hesitant to replace them because she rarely remembers to wear them. Then on Friday the school sent a note home saying she had failed her eye exam and must be seen and get new glasses. They show her as nearsighted and the last eye exam showed her as farsighted so who knows. I will take her soon to get that figured out. She is getting to be so grown up and has figured out that The Easter Bunny and The Tooth Fairy are not real. She is excited to be a part of the secret for her brother and sister though. Anna has it all confused though- she thinks it is The Tooth Bunny.

And then there is Gabe. SPOILED ROTTEN GABE! That is the sweetest kid but man is he spoiled. He is a mommas boy and he knows he's got me wrapped around his little finger, and all of this at a mere 14 months. He is eating like a pig and amazes me with what he can do with 2 teeth. He is getting closer and closer to walking but is still afraid to let go totally. I'm OK with that. We got a swing set and he loves to go down the slide, feet first, on his belly. He laughs the whole way down and gets the rest of us laughing too.

I'm out of time but never out of thoughts. I'll be back ASAP...


Sunday, April 1, 2012

365 And Some Change

How did Gabe get to be one already? I don't know. His first year was a whirlwind! He actually turned a year old on February 24th but we were all dealing with the flu and didn't feel much like celebrating. We ended up having a little family party on his due date- April 1. I was a hesitant to order a cake from a bakery because of the whole peanut allergy thing so I ended up making him some sugar cookies with icing. He loved them and in hindsight I wish I would have done the same for the girls. It was easier for him to handle and eat. At a year old he is 18.8lbs. He can say dada, mama, kitty, and bubble. He cruises the furniture and will stand alone for a brief second but doesn't seem all that interested in walking. Crawling is much faster! His favorite food is a donut hole which his sweet babysitter Christy brings him everytime she keeps him. He still sleeps all night- usually for 11-12 hours (yes, it is heaven)! He is the baby everyone dreams of having. And it's a good thing we got him because he is no doubt our last!!
PS- I ordered a book for Carly called "Views From Our Shoes" and it arrived today. It is full of essays written by children who are the siblings of special needs children. It explores their feelings about being the sibling. Carly has really been able to open up about some feelings after reading that other kids feel a lot like she does. If you have a special needs child with a sibling this is a MUST BUY!! Next stop...Sibshops!