A much needed long overdue update......

Well its November 25th and woke up this morning with a light blanket of snow on the ground. As much as I would rather not have snow (mostly to drive in sucks). It really has put me in the Christmas spirit. Took some pics of Mallie yesterday for our Christmas card this year. We had a lot of fun and I was very pleased at how they turned out. I stole the idea off pinterest. Finally actually carried out a PIN - yay!! I will post a few on the blog today :) So where do I begin with all the newest updates!! Its going to seem a lot like rambling because there is so much new information. So bear with me!! We have had a few appts since the last time I updated. We did follow up at the CI dr's office for her tubes and then happened to get in right away that day to see one of his partners about her mouth breathing (tonsil/adenoid consult). This was in August, yikes, its been awhile. I was not impressed with this guy as he seemed more turned off from helping us because she is so small. Saying they don't like to do that kind of surgery on kids under 2. Hello, she is 3! Plus she has been thru like 5 other major surgeries, no problem...Not that we want more surgeries. I just want answers and resolution on why she mouth breathes and why she has such THICK fluid. So he basically made up his mind before even examining her. Said well when she has to have tubes again we will see then and maybe do it all. WTH? So I set out for a second opinion...got a referal to Dr. Afman (he did her very first tubes). He also works with NICU babies all the time so her size is not going to be an issue :) Ok so then we met with the Neuro - Develpment team in Sept - It was a very good informative appt. After leaving there it did feel like we are starting all over again with drs, tests, etc. She is three and not walking yet - so she referred us to Mary Free Bed for AFO's (leg braces) and a Walker eval - Tools to help her get Walking! Also referred us to Pulmonology (sleep study and breathing) This is too follow up on that mouth breathing ( appt not set until Jan sometime). We will need to get a sleep study to see if she does have Apnea :( Lastly, she referred us out to a Pedes Ortho doc. We see them in January too. This is to keep an eye on her bones, alignment, etc because of her not walking yet. So we did get into Mary Free Bed and get fitted for her AFO's. She did AWESOME at the appt - they had to throw on quick fiberglass cast molds to send off for a custom AFO. Had to one of them twice. She never cried or anything. She was a very big girl!! Those came in 2 weeks ago - so we set up for the Walker eval that day as well as DR AFMAN ENT follow up on her tonsils/adenoids/Mouth breathing. 3 appts in one day and back to back! Steve was leaving for Canada the next day, he needed to work, So Grandma Mary came with us. It was a good day and her coming along made it much smoother. Thank you MARY!! So the leg brace appt was first - she did pretty good letting him put them on. SHE does not like them tho, haha! Gotta get her used to them. They are very hard to get on and she does not help you while trying to get them on. Making a very ticked off little girl and frustrated momma! The walker eval was awesome! The therapist there showed us so many things we can do to help her. She did not think Mallie was ready for a walker just yet - we need to work on balance and standing first. We were so impressed with how the hour long session went - I asked if we could come back some more. We are down there all the time anyway. So we have 4 more appts with the PT's there! One next Friday in fact :) After that we flew over to Dr Afmans office. He said everything I described does sound like Apnea. That LOUD snoring does not have to be a factor. that bothers me alot to think she could stop breathing while she is sleeping....so he looked her over too and said her Tonsils are bit large. He wants to get a sleep study done first to see what we are dealing with. Since we saw him before Pulmonology - he can get that ball rolling now. Hopefully we will get that over with soon! Then we schedule a surgery if needed. Her one tube is OUT already - could not see the other one because of all the wax :( We see Dr. Daniels this week so he will clean her ears out and look better. She has only had these since June I think! So we can do it all in one surgery hopefully. Afman can do those too! Oh yeah and two days before these appts - While Grampa John was fixing our shower - he drilled a hole in our closet to get to the back of and found MOLD! Absolutely disgusting, IT WAS BAD!!! Serve-pro said Months...so who knows how long but that was probably contributing to Mallie's fluid in her ears. Now that its all gone I am hoping to see a light at the end of the tunnel on that. Ok, we did see her Endo doc again and she said doing good on everything - still wants her to eat more. Try to up her hormone - but the next day after that she was a beast again. I still think it effects her somehow. This week we have the CI - tube surgery follow up and PT - then her ophthalmology appt. I am little worried about her eye appt. Last time we saw her she mentioned Mallie had higher pressure in her eyes. You can see it because her eyes are puffier and don't seem to open as wide as they should. This makes her have the appearance of being tired. Everyone always says - oh you look so tired little one. Well its just her..... She was not overly concerned as she said it could just be her. They need to monitor it tho because it can be a sign of Glaucoma. It can lead to blindness, etc if not addressed. If it gets really bad, I mean. I guess will see what she says Friday. They have to dialate her eyes - that will be fun! As for everyday life - Mallie never ceases to AMAZE!!! her speaking is getting better all the time. She is doing great with that. She is almost 19 pounds and she is about 32 inches tall. Pants have to be 18-24 month for Length but most 12 month shirts and dresses fit her great. Almost out of baby clothes. Although I think 24 months is still considered infant in some cases. I have been trying to get her to wear the braces every day for a 10-15 minutes at a time. They are only meant for when she is standing really so the time with them will be limited for awhile. I hope everyone had a great Thanksgiving and looking forward to Christmas this year!!