Monday, January 28, 2013

Grandma's House!

These kids always have fun at Grandma and Grandpa's house! They have made it their own.
 Relaxing in their new bunk beds at Grandma's!
 Holding cousin Dara!
 Silly Kids!
 Look at Mr. Monkey Jace... he worries me!
 Aww, Miss JJ with cousin Dara!
 Now this is adorable... Jace loves his baby cousin!
 Princess Mak, she had me put her hair in a bun like Tinkerbell!
 Watching TV!
 They love to spin together!
Mr. Bailey and Mak

Potty Training Jace

Jace needs to be potty trained before August, so we have a little while yet. He is not as into it as I would like, but after spending a year training the girls... I know not to push it and he will do it when he is ready! He goes on occasion without haveing to be reminded... but he also goes in his diaper. So we will get there... soon I hope! And once he is done... NO MORE DIAPERS... EVER!!! 4 kids and 5 years of diapers!
Bib boy underwear!

Jace's Birthday Party!

Jace had a great birthday party. Thanks to all who came and helped. He had a great time, as well as the girls! Can't believe my baby is 3!! Hope 3 is easier than 2... I can hope!
 
 He had lots of help opening presents!
 Showing off their dinosaur tattoos!

 Lots of balloons!
 Maysisaurs!
 They got to play in the basement, fun as always!
 Getting ready for cake!
 Time to blow out candles!
 Good job buddy!
Lots of fun presents!

January 11th, 2010 - 3 years later!

 Jace got a few presents on his birthday!
 Each of the girls picked out a special gift for him and then gave it him.
 And of course, they girls got a present too...
 Jace's favorite present!
 Birthday cupcake and candles!
Yum, well actually he did not eat it... he wanted to play with his new train table!

How cute are they?

Can't decide which is my favorite!



Tuesday, January 22, 2013

Jace's 3rd Birthday Party

Mr. Jace had his 3rd birthday party this weekend. It went great. He had a good time and we enjoyed seeing all our friends and family. Thank you to everyone who came, we appreciate it! More pics to come!

His theme this year was Dinosaur Train, he loves Dinosaur's and Trains!

Makenna Enzyme Trial Update



The face! This is her face when she is in a mood.

I got a call from the nurse at Dr. Vanderpool's office at Riley Hospital the other day. She called to give me an update. The Doc asked her to call me so I did not think he forgot about us! She said he is looking into the Surcaid trial. He is waiting to hear back from them. He wants to make sure it will be worth it for her, and us to do it. He doesn't want it to be a waste of our time since we have been through so much already. We have an appointment scheduled for April, but hoping to hear before then. It may or may not help her.

There are days when she is in a mood and we can usually get her out of it by getting her attention onto something else. But then it will come and go all day long, sometimes for days at a time. As I have said before, the one thing that frustrates me the most is the rash. I just don't want her to live with that forever. So if it's worth a shot to get rid of that... then it's worth it. So we will see.

Monday, January 7, 2013

Playing in the Basement!

Took the kids to play in the basement yesterday. They love being down there but fight a lot and have to keep a close eye on them so we don't go down much. We tried to teach them to ride their new bikes. Mak did great and learned pretty quick. Even Maysie got the hang of it for the most part. Jace and JJ not so much. JJ scares me! We will have more time this summer and be able to work with them more.


Makenna Update

This poor girl, she looks ill, she looks miserable. The circles under her eyes are so dreadful. Thankfully at this very moment she had just poo'd so she was in a good mood - but this is either the end of an episode that she had over the weekend and the Zinc we give her daily is working and making them last for a shorter time - or it is the start of a mood that is about to come.

Update:

Well, we are still waiting to hear back from the doctor. I have emailed the dietitian twice now in two months and she still has no answers. No one knows anything about the Surcaid trial I want to try, so not sure that will be something we can do. I hope the doctor has just been busy and will look into it. It is worth a shot.

We are living with this, we are dealing with this, we are managing this. We have good days and bad days. We even have good weeks and bad weeks. But the most important thing is that Makenna is the one living with this. She knows nothing else. She has had a "diaper rash" and mood swings since she was born. Now, 1 year after being out of doctors day and night, she still has the rash and the mood swings are uncontrollable at times.

A huge part of me just wants to end all the visits to the doctors and just live with this the best way we can on our own - especially since no one knows how to help us. We got lucky finding a doctor to give us "some" answers. But there could be more. There could be more treatments, more help. So do we keep pushing until we are satisfied... but will we ever be satisfied.

There is one solution, a way to avoid the doctors. But it is next to impossible with Josh and I both working full time jobs, having multiple care givers, the girls in school, and most importantly, having three other siblings. That solution is an all out elimination diet. We start with the basics like rice, chicken, a couple other foods, and water. That is all she would eat for 1-2 weeks. And then every 3 days introduce a new food and see if she reacts. And continue it for as long as it takes until we find out what she can and cannot have. One day we will do this, but if we don't get the advice and help from the doctors, then we will have to wait until she and her siblings are all old enough to understand what is going on. Right now, we can manage it, keep it under control, so it's not fair to her to make her live the next 6 months on this restricted diet while she watches her siblings eat whatever they want.

I hope her GI doctor is able to find an Allergist or Dermatologist to offer some assistance and take an interest in Makenna and do all they can to help us find answers. Otherwise, we are on our own.

If I could take the pain away, the hurt away from her I would. But I can't. To watch your child sit there why her brother and sisters eat a cupcake while she eats a yogurt at a birthday party is so heart breaking. She understands for the most part, but of course she wants more than anything to eat that cupcake too. She is 4... any 4 year old would. It brings tears to my eyes to see that look on her face. I know its just 5 minutes of her suffering rather than 3-5 days of her suffering rage, mood swings and a rash, but its still so hard to see. And it's not fair to the other three to take it away from them.

I just want my daughter to be able to be a 4 year old and eat pizza and ice cream like her siblings and friends. I don't want to see her traumatized when she is 10 years old because she has to use diaper cream to make her rash better. I don't want to see her siblings resent her because she can be so mean to them at times. And I don't want to see her cry because her sisters wont play with her because they are afraid of her. Yesterday I had to put her in her room for time-out and she grabbed around my neck so tight, I struggled to break myself free as she was choking me. The look on her face during a mood is devastating, it's the look of a child in pain, a child hurting and confused, a child lost in her own body, a child who can't break free of this thing that takes over her body. And for these reasons and many more - I will keep fighting to find answers, to find solutions.

Dinosaurs!

Grandma B and I took the kids to see the Dinosaurs at the Coliseum this weekend. They were so excited! The one thing they were looking for to doing the most was riding them. They talked about it for a couple days. It was EXPENSIVE! But it was worth it, they had so much fun.

Walking around, looking at all the dinosaurs. Mak was in a "mood" so she was a bit difficult, but was able to manage and still enjoy herself.
JJ just started to get excited as you can see from her face! MJ was still very scared and would not get close to any of the dinosaurs!
Maysie very scared!
Having fun!
They enjoyed being able to touch them!
Mak went first, she seemed to enjoy herself. She did not like waiting in line and said she had to go potty about 3 times in the 10 minutes we waited. Again - it was the mood she was in.
Jace having fun!
Got a smile out of Miss Mak!
Jace does not talk much, but he does talk and when we told him about the dinosaurs, he would not shut up about it! So cute!
JJ surprised me and did great! She was not afraid and had a blast.
Look at that smile!
Maysie a bit scared. At first she said she did not want to ride. But once she saw her brother and sisters do it, she said she would.
I think Maysie ended up having a good time riding the dinosaur!