Friday, March 20, 2009

A little update on Lillie !

Lillie's ankle braces got finished and she has had them for a couple of days now and we have realized she needs all new shoes!because the braces are bigger and need more room which is squeezing her little toes and leaving marks!So I decided the best thing to do is sell Lillies shoes and go through all of our shoes and sell them at the garage sale Iam having at a friends house to marrow, and Iam going to use that money to buy Lillie a couple pair of shoes that make her feet feel much better!Lillie has to wear them 6 hours a day so we are trying to get her use to them first and work her up to those 6 hours.

Lillie had her GI appointment this week and her doctor said that Lillie can have her feeding tube removed THANK YOU GOD she has had this tube since she was 6 months old and she is now 28 months old!! we are praying though because Lillie is allergic to all dairy and cannot have regular milk and she is also allergic to soy milk as well so she has to be on her pregestimil formula!and you see our insurance will not cover her formula unless it is going through her feeding tube because then it is considered a life support type of thing! so please be praying!this coming wed we are taking her to Oakland to get it token out maybe!see Lillie has some tissue growing on the outside of the sight where her tube is in place so her GI doctor carted it before we had left and well that can cause the tube hole to not close all the way and will cause her hole to leak her intake!So her GI doctor said she would take a look on wed to see if the tissue went away and then if it did go away we can take it out other wise she will have to have it stitched up by surgeons :( It sure is harder the older they get when it comes to all this medical stuff!I think its because they know what is going on and that you are taking them ext..

Lillie also went to the audiologist which is a hearing doctor! her speech therapist suggested that she see one only because she said that when she uses head phones on Lillie's ears and the words are being said in her ear she speaks 60% better and she is not sure if it is a attention thing or if it really is a hearing lost of some sort!
So we went today and Lillie sat perfect for the whole thing they did about 4 different test on her and at the end they told me that Lillie is very smart and that these test were apparently boring to Lillie and she simply didn't want to turn and look when she heard the sounds ext!so they said the test showed something in her right ear but to tell for sure we have to WAIT!!6 months when she can do a big girl test!!:) so really I was okay with that I really don't know why Iam okay to wait but that is what my God wants for us so it will be for us some more waiting!!!I know its so crazy we are always WAITING,WAITING AND WAITING it is so awesome to me though cause I know God knows and in his timing we will know!!Iam just so thankful to God for all he has done for Lillie and our family!Its like he gives us new bumps on our journey and its when the others go away we are faced with new ones!It is neat and like his word says he does not give us more then we can handle!but he does give us more then we think we can handle so we are turning to him in the trials he gives us to face .
Iam planing on making a allergist apt for Lillie to possibly get her retested for her allergies to see maybe if some of her allergies have subsided and then that way we might be able to get her off the pregestimil.Otherwise Lillie is growing and is fun to watch grow and best of all she is a happy little stinker at the fun age for mommy and daddy of 2 1/2 :) we all know about that special number 2 lol!!!


The Johnson Family said...

That is SO awesome Crystal. It is so neat to see you giving all the glory to God through all of these, even through all the waiting!

Grant and Lucy's Spot said...

Hey Crystal!!! It's so good to see Lillie and hear that she is doing so well! Praise God! We will be praying for the tube removal, that everything goes well! Keep us posted! Miss you and love you!

For His Glory said...

We are always waiting it seems on God to work...He is using this time to make you more like Him :) Love ya~Sooo cute is that picture!

athomemommyof3 said...

It was so nice to meet you today!! I NEED to update my blogs reading yours, I see that Julie is your physical therapist!! Caleb had her too!! WE miss her tons, but are so thankful we were able to meet with her...when you see her, please tell her hello for us! :) I'm gonna be addicted to this again! Have a good week!

The Pichura Family said...

Crystal, thanks for the update! It was such a blessing to see Lillie in person and see the growth that has taken place!!! And the spiritual growth that has taken place in you and your hubby's life!!!