Wow...a really bad blogger!!!

Caitlyn's school picture--2009

I can not believe it has been almost 4 months since I last wrote!! It has been a whirlwind!!

The school year started out really rough for us this year. I will spare you the details, but let's just say it wasn't pretty, and we fought like the dickens for our little girl. In the end, we seem to be one step ahead. If you are a parent of a child with special needs, I urge you to learn your rights, and learn your daughters rights. It is my feeling that school personnel assume parents don't have a clue! We have to all unite and prove them wrong!!

Caitlyn got her first cold of the season in October, and I'm happy to announce that with the aide of the 7 lbs she has put on, she pulled through the cold like a pro!! Getting a G-tube was a tough decision for our family to make. In the end, we had to make a decision based on what was best for Caitlyn's health, and our families quality of life. I am sooo glad we made the decision to go ahead with it!!!

Since my last post, we found out some very exciting news!!! At the end of April, Caitlyn is going to be a big sister!!! We are nervous, but excited to be adding to our family! Caitlyn seems excited when we tell her about it, as long as we don't bring up her having to share her room...She gets a little upset about that!

I promise to try and update more often!!

Bad Blogger

Well I sure feel like a bad blogger...Today is August 9th, and it has been a month since my last post. A lot has happened...where shall I begin?

Caitlyn had her G-tube put in on July 10th. She did great, and handled it like a pro! I didn't do too bad, either. This huge life altering event was hard to do...I struggled sooo much with this decision. We have been feeding Caitlyn with the tube for just over 3 weeks now...She gets 1000 calories of formula throughout the day, plus whatever she eats orally. I am happy to report that in those 3 weeks, Caitlyn has gained about 2 lbs!!! I doubted if we were doing the right thing, but now I know we did! The stress on our family has significantly dropped during meal time! The first change I noticed even before weighing her was that her sunken eyes are gone!! She is fully hydrated!

On July 17th, just one week after her surgery, we had the opportunity to go to the Wiggles concert!!! A wonderful man that lives by as works at the arena, and gave us tickets. When Eric thanked him, explaining that Caitlyn had just had surgery a week before, and this was her first outing, and it meant the world to her, the man must have been moved. He is getting us circus tickets, and tickets for a couple of other kids shows this fall!! How wonderful!

We are hoping that school will start on September 8th, without any issues. Our school district contract is up, and we are waiting for news of a start date, and settled contract. My baby needs to get back to school...We pray that both parties realize these are trying times, and settle quickly so that the students can all get to school on time!!

This past weekend we had an AMAZING time at camp Prime Time. This camp is soooo cool!!! We attended two nights away from home with other families from our county at no cost to us. We had to pay a $20 deposit, and had the option of getting it back, or donating it! What a wonderful experience it was!! I am hoping to register a weekend for Rett Families for next summer!!! The picture up top is of Caitlyn enjoying the ride around the lake in the camp's boat!! Sooo much fun!

Caitlyn's Surgery

Just a quick update to let everyone know that Caitlyn is resting in her hospital room after her surgery this morning. Everything is going ok so far. I will post more in detail when I am able too. Thanks for all of the prayers.

One step closer

Caitlyn was a pro today!! She had her Upper GI study done, and didn't fight it at all. She refluxed twice during the study, but the doctor said there doesn't appear to be any damage from the reflux! Thank God! So, unless we hear otherwise, it sounds like we have the go-ahead for surgery on July 10th and it will NOT include a Fundo procedure.

As the day approaches, it is getting a little easier. After tomorrow, there is one more week of school. After that, I start work at summer camp and Caitlyn heads to daycare. It will be nice to have a couple of fast pace weeks before surgery!

If you are local, I'm sure Caitlyn would LOVE visitors while she is in the hospital. We are hoping to only be in one night, but will update more as we know it! Thanks to everyone for all the love and support.

Surgery is scheduled...July 10th

I just had to start off this post with this picture of a very sweet looking Caitlyn...Isn't she beautiful? I love my girl!!

Eric and I told Caitlyn on Tuesday for a consult with her surgeon. He was wonderful! We really like him, and that will make this all that much easier! He talked to us about the surgery, and what it would involve. We talked about her reflux, and discussed if we wanted to have a fundo done at the same time. He told us that with the increased volume in stuff going into her stomach, her reflux could increase. We all agreed that since she is only on the Prevacid once a day, there is still room to increase that dosage if needed, and we declined having the fundo done! (soooo thankful to those before us that have shared their experiences!!) Caitlyn will hopefully only be in the hospital over night. She must be eating and drinking the same as before surgery in order to go home. The feeding tube will be in, but we wont use it for about 7 days.

Caitlyn will have a bard feeding button placed during surgery. Her surgeon prefers the Mic-Key button overall, but likes to put the bard in to start with. The reason is, it is harder to pull out. If something should happen, and her tube came out, we would have less than 2 hours to get her into the hospital to have it replaced before the hole closed up. We will go in after three months to have the tube replaced, and we can switch to the Mic-Key at that time if we'd like. While under for surgery, Caitlyn will also have an umbilical hernia repaired. On top of that, we will take advantage of her still state to have dental x-rays done! It will be a big day and change our lives forever, but I'm sure it is for the best. Our hope is that Caitlyn will continue to eat for enjoyment. On those days when she just wont do it, the tube will do it for her...

I appreciate everyones comments, thoughts and prayers while we go through this. I am doing ok...well, that is until someone asks how I am doing. This is an incredibly hard decision to make for Caitlyn. I know in my head that once it is over, I will be fine...I know this is what she needs. Until then, I feel like I have failed at the very thing I have be given to do. Feeding your child should be the simplest of tasks, and I can't do it...I can't get my own child to eat enough to sustain, let alone gain weight. So, I love the support and I love that we have such caring family and friends...But if you ask how I'm doing with this decision, please consider having a tissue handy...I just might cry...

The announcement I never wanted to make...

In late March, I posted about Caitlyns struggles with weight, and what was to come next. So, in the past few weeks we have had a floroscopic swallow study done, and met with the Nutritionist.

First the swallow study...In that post about her weight issues, I said we didn't expect anything more than an immature swallow to show up on test....Well, I was wrong. Caitlyn's feeding study showed silent micro aspiration caused by a delayed swallow. A break down: Silent-meaning there was no gagging or coughing to clear the liquids from where they didn't belong; micro aspiration-a small amount of liquid was going into her airway; delayed swallow-Caitlyn would pool her thin liquids in the back of her throat before swallowing, instead of swallowing more often...Then after the liquids pool, she would swallow causing the micro amount of liquid to go into her airway. So we went into that appointment not expecting anything...We came out with orders to thicken all liquids to a nectar consistency...

We continue to struggle from day to day with feeding...Dinner seems to be our biggest struggle...With dinner, we have 6 pills that Caitlyn has to take...Some nights it is such a fight that we both end up crying in the end...Eric and I have discussed a lot what options we have...The constant fighting and forcing of food has become a huge quality of life issues. So yesterday Caitlyn and I drove down to Children's hospital with our 3 day diet log to meet with the nutritionist. We talked about everything, and she looked at the diet. She said we were doing all the right things to add calories. That felt good to hear. It is nice to know you are doing what can be done...Yesterday Caitlyn weighed in at 40 1/2 lbs, and is 3 feet 11inches. This plotted her with a BMI of 2%. A child is said to be underweight with a BMI of 5% or less. It is of no surprise that Caitlyn is underweight...

So, after going through all of the pros and cons to all of the decisions, we have come to one...We didn't come by it lightly...It took a lot of discussion, but Eric and I have decided, with the support of the nutritionist and her Ped, that we are going to begin the process to have a G-tube placed. It is not for the convenience, it is for the sanity...It is for the peace of mind of knowing that she will get her meds ever night with out a fight...It is for those nights that she is exhausted after a day of seizures, and just doesn't want to eat...It is for next year and every year after when she gets sick...We will never again have to fight through drink after drink to keep her hydrated through illness...I'm scared and terrified and a little sad that this is the decision to be made...But am also hopeful for the future...

Some good and some bad

Of course we should start with the good!!!!!! I can't believe I never posted this...Caitlyn's school progress report came out in early March...Now, she has been on an IEP for nearly 3 years now and has NEVER met a goal. We have seen a lot of "making progress but goal not yet met," or "expected to meet by end of period" and then never meeting it...Well, I am soooo pleased to tell everyone that Caitlyn met her first two goals!!! They are both simple self help goals. One is eating from a loaded fork, which she is doing wonderfully well with! Now, if only we can get her to not throw the fork across the room after taking the bite...Do they sell weighted forks anywhere? The other goal is putting her tray away after lunch. It think this goals is significantly adapted to look something like Caitlyn walking a couple of steps to a bin at the end of her table, and it being done with a considerable amount of support to direct the tray where it needs to go, but she gets it! And they are accepting the process as meeting the goal, because it is obvious by her eye gaze that she gets the instruction, just needs help with the motor planning to complete the process.

I don't know if I posted on this yet...I was kind of waiting until we received it so I could post pictures...The school district is getting us a child specific weighted blanket to help facilitate with communication! It is amazing have fast that pressure pulls Caitlyn out of a melt down, and allows her to communicate what she needs!!

Now a little bit of not so good news...We seem to be dealing with an increase in seizures. It is so frustrating to see, when we just added a new med! I know that it is most likely because she is not to a therapeutic level on the Depakote yet. I really hope it isn't in fact the addition of the Depakote! She was reported to have a few yesterday, and she had one today. They do continue to be short, but scary when she is standing. I am afraid she is going to fall one of these days...

Ok...Caitlyn's kindergarten class is going on a field trip soon. We are hoping to find a way for Caitlyn to be included for this field trip, but it is a lot of walking on uneven ground at a nature place...I wonder how the Maclaren would do off roading...Or maybe the school district would have a chair she could use...I just don't want her to miss out on all the fresh air! She'd love it!