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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, January 17, 2012

Time in a bottle!

I can't believe how fast time seems to fly! With each week our little family slips into a routine and other crazy things that are happening and I forget to record those moments or funny things that go on. Dang it!

Life after the Monster Truck visit and show did not slow down as anticipated. Munchie had a doctor appointment that proved she is still growing. I was sort of hoping she would STOP and be my baby longer. She was in the 97% for her height and 61% for her weight... Tall little thing already wearing 24 month clothes at just 16 months. She was also weened from her beloved Ba Ba (bottle) She was by far my longest to get to keep it. As with the other two kids, we just take them all away cold turkey. DONE! It is by far easiest for me to have one miserable week than to cling.... then take away.... then cling... So goes for self feeding and potty training. Just go all the way for one nasty week, then it is over. I am glad we have never had a Binky lover or a thumb sucker. I just have snugglie blankie lovers and of course Bensi/Didi who has been safely tucked into the ceder chest. I would have let Gator have Bensi longer but Daddy gets a say too and we finally decided together that it was a good time to put him away.
Munchie also gets to go to nursery!!! We normally would have to wait till she was 18 months. But with my two callings and Daddy doing his bishopric thing it makes for a hard spot with her. We often had to pawn her off onto someone who could help. Yesterday was her first attempt and she loved it! I think she liked the toys the best.
Gator is doing great health wise... Have I mentioned that his appetite has done a 180? It was a constant battle to have him finish a meal. Now he is usually done first and asking for seconds. He also wants snacks throughout the day... always needing something in his face. He drives me nuts with the cups he leaves around the kitchen half full of drinks. He can also write his name all by himself now! This whole ordeal was almost more than I could take. But.... Papa took it upon himself to teach him and be patient with him. Something that I could not. He usually ended up in bed if I was helping him. He would tell me things that made me mad "I can't do it, I am just not smart enough, my brain doesn't work like that" Then he would cry, throw a royal fit and try to get out of it. He is smart enough he just didn't want to do it. Now I am finding his name written all over things. I started working with our awesome principal to get Gator ready for Kindergarten.... This has been more work than I thought! The first thing to happen was a paper that came home stating that the school needed to know of any up coming students. That was Gator, so I filled out the paper and before I sent it I made a little phone call that would alert them to Gator's medical needs. I am not sure how many other heart kids out there have IEP's VS 504 but this is our big debate. So then I had to call the school nurse who then had me call the district... I chatted with the gal from the district who wanted me to call and see if Gator could be tested in order to see if he was behind. I know that he would be extremely behind if he hadn't been in Miss Joey's wonderful preschool for the last two years. I also emailed Gator's wonderful Early interventionist and got some ideas from her... I love that gal. So at this point we are waiting for a packet that will help us decide if Gator should go to another preschool before kindergarten and then we will also know if we need to have an IEP or a 504(health plan) one thing I am requesting is an AED. I hope we can get one for our school. If not I have big plans for a fund raiser. I also heard about this cute program called monkeyinmychair.org from Daniel's mom. It is for kids with cancer and not heart babies. I plan on adapting it to fit our circumstances. I think this would be a wonderful way to keep Gator involved but not freak out his new little friends. We are also in the process of securing letters of recommendation from both his Ped and his Card. This has to be done per requisite of the district. I think it helps with actually getting a meeting with all the educators/health staff scheduled. I got a call this morning that his Ped's letter is done and now we wait on his Cardiologist. I may need to phone that in as I only emailed before. My suggestion for others is to start very early. Almost a year in advance if possible.
Ry has been doing her thing. Playing some Basket Ball and actually going to a Jazz game with Daddy. SHe made a basket during her game on Saturday. She has such a natural ability with anything she does. Her classes switched places. French is first and English second. She seems to be doing okay. I think she may be trying to cope with all that goes on in her life and sometimes has stomach aches. We have been trying to fix them but it is hard to be the big sister and deal with so much. I ask a lot of that little girl and she holds up pretty darn good most of the time.
We have today off and we have been doing laundry like crazy and we ran over and cleaned daddy's shop! We think we are going to hit the Car show tonight for FHE!!!! I am going to sit in all the Mini vans and drool... Someday I tell ya!

1 comment:

Jake & Stephanie Ellinger said...

We have both a health plan and IEP in place for Nathan, but he has been going to school for a year already through the school district. The school also got the ok from the school district to not only have 1, but 2 AED's and that Nathan's teacher will be trained on how to use it. There will also be 7 other people in the school with the right training.

So many things to worry about! Our first IEP was a horrible experience, but the one we had a couple of weeks ago was really great.

Good luck!