Great News!

princess' sweat test came back normal, that means no Cystic Fibrosis. Some blood work also came back which were for Celiac Disease and a Thyroid problem, all of those were normal as well! Thank God! So now we are waiting for a few more blood tests and her echo which will be done on August 22nd. I'll let everyone know as I get more information. Thanks so much for your thoughts and prayers! So far this is great news! She started her prevacid today and we will see if that helps her eating at all. Prevacid is for the acid reflux.

Doctor's Visit

Today was our first appointment with Dr. Hunt, she is going to be princess' GI specialist. The doctor checked her out a little and asked a few questions. Here is what we are looking at now:
1. Cystic Fibrosis, princess has many symptoms of this, however she also has a few that are not symptoms of this. Such as the not wanting to eat much. The test for this is a sweat test, which was scheduled and done today. the results will be available either tomorrow afternoon, or Thursday.
2. Celiac Disease, princess also has many symptoms of this, the test for this is blood work and we are waiting on some of that to come in possible tomorrow, and more next week.
3. A heart problem, possibly a murmur. The doctor heard something irregular today and wants it to be checked out further. She will need an echocardiograhm, I'm not sure on that date yet.
4. A thyroid problem. The reason for this test is because she is cold and has pretty much no energy 75% of the time. That is also blood work and should be in next week.

So now we wait again....This is the worst part for me, princess still doesn't have any clue what all is going on, all she knows is that she is shuffled from doctor to doctor. She is doing great with it and is better at getting blood drawn now than I am, when they took her blood today she didn't flinch, cry, or anything. The doctor said she is very concerned about her because she is severely under nourished. I kept thinking, yeah I've been saying this for a while now, I've know something is wrong in my gut but no one seemed to listen until moving here. Same with the speech, I tried for three years to get her help with that, and was pretty much told she was dumb by doctors in Alabama. Come to find out she is very smart, and DOES have a speech problem. I've also learned that the sweat test and biopsy done by the GI doctor there at 16 months, was inaccurate. Because she was too young at that time. I'm fed up with the doctors in Alabama and pretty much starting from scratch here. Luckily they are working for princess and seem to be much more aware of whats going on. I'll post as I get more information.

princess's birthday party

Today was princess' 4th birthday party. We had a good time. She had a few friends over and we had a ballerina princess party. We started out with doing the girls make-up, each girl got her own backpack sack with make-up and such and then Sarah and I did their make-up and painted their nails. I had a runway set up, that I found at Wal-Mart and the girls got to pose on the runway while we took pictures. They enjoyed doing that. We then played put the cell phone on the girl (pin the tail on the donkey) and Hayden and Lexy won that game. All in all we had a good time, and she really enjoyed her birthday. She did get a bike, which she has been wanting for a long time. Here are some pictures from the party today.
princess riding her bike

princess on her "runway"

May-C (princess' best friend!) on the runway:)

princess again

Lexy on the runway

May-C and princess being ballerinas

The gift table

My Birthday princess.....the outfit was made by Leigh

princess' birthday balloons

The runway

Her cake


monkey had his Occupational therpay evaluation yesterday and they did qualify him for services. He will start in the next couple of weeks with that. He is not too far behind on most things, but is showing some muscles weakness (he can't quite hold his own bottle yet) so that is great that he will be able to start OT now and hopefully do great like princess does. They are concerend however because of his weight, he is beginning to show signs of falling off the growth chart like princess did. He weighed 4lbs 13oz at birth and at six months weighed 17lbs, now at a year he is weighing in at 18lbs 3 oz, she wants a nutrionist to come out and evaulate him, and just see what happens with princess before doing anything with him. So we shall see hopefully Tuesday we will have more information on her.

Hope everyone has a great weekend

Updates

princess will be going to a GI specialist on Tuesday at 1015, she will be seeing the ENT (ear, nose and throat doctor) on September 15th. Their are only two GI locations in DFW area for pedicatrics. They were booked until mid-2009, but because of princess eating so little and her "failure to thrive" digansois they were able to get her in stat. I'm thankful for this, because I am a worrier and I can not take the waiting. Good news possibly. She has had a sweat test and a stomach biopsy at age 16 months. This could mean that CF is out of the question. I pray this is true! Both test were negative so from what I understand they can not develop a positive result later in life. I should have more answers on Tuesday.

monkey will have his Occupational therapy today at 2pm. This is the appointment where we will know where to go from here for therapy. Then tommorrow is princess' birthday party at 1pm, so we are going to be busy these next few days. I will be sure to post pictures soon. Also some new things we got around the house and the story behind it to come soon......

oh ps. I am reading "Obama Nation" right now, so far it's good. I'll post if I find any interesting facts from reading it.

Some Answers

This is for those who have asked this question, which have been many. Yes they have said for 4 years that it is because I am petite so naturally princess will be. However, now she is having more problems, she eats about 4-5 bites of any food, sweet or not. She also chews her food and then spits it out, saying her belly hurts or she is full. She also has some problems where she is coughing throught the day, sometimes with phlegm(sp?), she has also had pnemoina 4-5 times (that's a guess, I actually think it's more than that). So with all of this combined, they think there is more to this than just the size of her. I hope and pray that it is just that im petite, and maybe something minor with her. All I can do now is wait. Todya they took 6 tubes of bloodwork and we should get some results in about a week, and hopefully have an appointment set up with the specialist somtime this week. Thanks for everyones care and concern.

On another note, princess is enrolled in preschool! YAY! I was so anxious to get that done, and this morning I did. So on August 25th I will have a preschooler and a first grader! I guess me and monkey will be sleeping until noon now! haha.....that would be nice if I could:)

A Lot going through my mind right now

Well yesterday was princess's 4th birthday! We had pizza for dinner and enjoyed the day together. She wore her pretty yellow dress with her pink pearl neckalce and earings:) She was so cute! Of course! Her party will be Saturday so by Monday I should have the pics uploaded.

Today was her 4 year check up, and I went in knowing that we would need to discuss the issue of not gaining weight, and not eating very much. (princess eats MAYBE 4-5 bites of food, no matter what it is, even ice cream cake, or browines.) So anyways, the doctor said today that there are two very possible causes. One Celiac Disease, which is a gluten allergy. Second is Cystic Fibrosis. I am not very familiar with either disease, but I am very nervous and worried right now. I read Confessions of a CF husband, often. I know the possiblites and problem with CF, and it's not very encouraging. On the other hand she also failed her hearing test the three times they did it. So now we will be visiting a specialist for the Celiac, and Cystic Fibrosis, seeing a specialist for the hearing, and having several blood test done. Tommorrow will be the blood test, which won't be back for about a week, and I have not gotten a date yet for the specialist. I will update as I get more info. Please pray forprincess, this is not something that she understands, and I really haven't told her much, she is only 4. I hope and pray they can figure this out soon, and that it ends up being not so bad.

Thanks so much Leigh!

Leigh made princess these beautiful outfits for her birthday gift from grandma and papaw. They are so cute, and princess loves them! Here are soem pictures, sorry for the hair, it was braided and she took it out!