A Promise and A Little Drama

Last night as I was getting the kids ready for bed, we saw a rainbow in the sky. I was reminded, and reminded the kids, that a rainbow is God's gift to us, to say that he ALWAYS keeps his promises!

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I was just informed this morning that Joshy has "ruined" Rebekah's life...he touched her toys. Ohhh, the drama...

Any Input??

I mentioned before that Rebekah's teacher had some concerns. We met with her this week (like I REALLY need ANOTHER thing to worry about??), and her concerns are with Reb's behavior/ social interaction. We have always know that, how shall I put this, Rebekah is a little different, not in a bad way. I call her my "free spirit". First there's John: classic type A personality. Then there's me: even more of a type A. Next comes Benjamin: type A...and then Rebekah. She doesn't fit into any mold and I try very hard not to label her.
I love and actually need order and neatness: give her a few minutes and she'll have things torn apart. As I walk by her room, I just close the door instead of going in and straightening up. I know that all kids are different and I try not to interfere with what "my" idea should be.
Now that said, I hope that I have not been blinding myself to a possible problem.
The teacher wondered if she is mildly Asperger's Syndrome. This is on the Autism spectrum, but very mild. It has to do with social interaction.
As I read about the condition, I am convinced that that is NOT Rebekah. She interacts, makes eye contact, is not fixated on one topic, is empathetic...all things that Apserger's is not.

I am wondering if it is more of a diet issue. I firmly believe that diet affects mood, behavior, etc. I know that we've had issues in the past with her (potty training for one).

I wonder if any of you have information or have experienced similar things? I talked to one mom (thanks Christa!!) about getting Rebekah on fish oil and probiotics, possibly a gluten-free diet...may not be the answer, but what can it hurt? Aside from that, I am not even sure where to start...Any input would be appreciated. Feel free to email me if you'd rather. mkuki06@yahoo.com

By the way, her preschool teacher is really incredible! She isn't **overly** concerned about Rebekah, she just said she's feel horrible if she didn't say anything and it turned out to be something. She is having someone from the Intermediary Unit (similar to Early Intervention, but for school-aged kids) come in and observe. Rebekah will still start K in the fall; she is VERY ready for that.

An Exciting Trip

Sorry I've been silent lately. That's because I just got back from an exciting trip!! Rachel and I took my mom down to visit my sister outside of DC. We went on Friday and came back on Monday. We had such a fun time.

Rachel was an angel (of course!). John and the other three survived wonderfully without me, and I actually got out of Erie County. Before I went, John asked me the last time I was out of Erie County aside from trips to Children's Hospital of Pittsburgh. I think it was to my brother's wedding in September. I was ready to go!!

We got there on Friday night, had dinner and hung out. Saturday we went to the Tyson Corners Center Mall, ate some crab cakes and then did a driving tour of DC. I've been there several times before, but it's still so exciting to be driving down the road and all of a sudden pass a famous monument.

Sunday we played a little wii (me for the first time) and then drove to Annapolis, had a few more crab cakes (notice a theme here?) and walked around the area.

Here's a few pictures for your enjoyment...

Shallow

This has been such a whirlwind week.

We had the emergency trip to Pittsburgh, which, thankfully, turned out fine.

A friend lost her baby and I had the memorial service for that. We all knew the outcome because of the baby's Trisomy 18 diagnosis, but it was still gut-wrenching. There's never a good way to say goodbye.

I got a note from Rebekah's teacher that she has some concerns she'd like to discuss with me. She said she doesn't think it's anything serious, but of course my mind is reeling.

John had an out-of-town trip, and I was "single-parenting" it for three days and two nights.

In the midst of this, we had water problems, so we had someone come in and work on our water heater and put in a new toilet. (Have I ever mentioned that we only have one bathroom?)

Rachel's hip brace has been leaving some marks so we had a "special" appointment today at Shriner's. We were just stopping in to see about the brace, but she's WAY outgrown it. The orthopedic doctor was in town (from Philly) and decided to just x-ray her hips now instead of waiting until April. If she was not responding to the hip brace, we would not get a bigger size. But she is responding very well. The doctor told us, "Whatever you are doing with her, just keep doing it." :) So, she had to get measured for a new hip brace.

I was pretty sure that Rachel would need surgery to repair her shunt. Everyone we talked to about the swelling said that it was a classic sign of a malfunction. Though not imperative, it needed to be dealt with soon. I packed clothes for us to stay several days. I emailed the kids' teachers to let them know of the disruption. We were elated when the doctor was mystified as to what the problem was.

I realized that for Rachel to have surgery, they'd have to cut off some of her hair. Not a big deal, but she's scheduled to have her one year old pictures taken this week. I was so thankful that she didn't have the surgery now so that she didn't have a bald spot or stitches.

I said to John that I wish we had the luxury of being so shallow that a bald spot in a picture was the greatest of our worries. I wish I was innocent enough that that's all that mattered right now. I wish that I didn't know what a baby's funeral looked like. I wish...

Rachel is Fine!

We are back from Children's Hospital of Pittsburgh and Rachel is fine. We went down this morning and got her right in for an X-ray and CT scan. The doctors saw nothing of concerns. He decided to tap her shunt in the room and it had good flow and pressure. The swelling around the back of the neck has gone down considerably as well.
So we were sent home. We are to continue to watch it and call if we see any changes.
The doctor really had no answers for us and doesn't know what it was. I do...God!

Going To Children's Hospital of Pittsburgh Weds Morning

For the last few days, Rachel has been acting fine, but I noticed a bulge along the back of her neck. This is one of the classic signs of a shunt malfunction. That's been the only symptom: no extra fussiness, lack of appetite, lethargy, sunken eyes, only the bulge. I've been trying to convince myself that it's nothing.
Well, John was supposed to be out of town for the rest of the week, so we took a good look at it and called the neurosurgeon in Pittsburgh. He wants to see Rachel first thing Wednesday morning and get x-rays. He told John that the swelling is a classic sign of malfunction, but if she's not fussy, it may not be bothering her...yet.
My fear has ALWAYS been not the surgery to correct a malfunction, but not catching it in time before damage is being done.
So, first thing in the morning, we are off to CHoP, again, praying that it is just a wasted trip.
Oh, this trip that John needs to take out of town, he's already had to cancel on it twice, so he REALLY needs to make it...his plane leaves at 5pm. Let's pray that this is nothing and that we can get back to Erie to get John on that plane...
Please pray for the other kids too, particularly Rebekah. She does not do well with this sort of thing. It took her months to recover from us being gone for Rachel's birth last year...plus there's some concerns at school...
It's just too much for me to deal with!

A Heavy Heart...

My heart is very heavy today for the Sledzianowski family. They were expecting a baby boy in a few short months, yet he died in utero this past weekend. I have mentioned the family before, and they knew that he had T18 and that he wouldn't live very long. They were already planning his funeral. Yet, this is still such a shock...
Little baby Benjamin Thomas Sledzianowski has met his Heavenly Father before he ever met his earthly father.
Pray for the family: Stephanie, the mom, is going to be delievering him today or tomorrow. I cannot even imagine the pain... Daddy Shawn, sisters Kelly and Rachel...
This is their website if you want to visit. Feel free to sign their guestbook. Even though you may not know them, they would appreciate all the support they can get...
http://www.caringbridge.org/visit/benjaminthomas

A Great Idea!...?

Hey, I have a great idea. Since the kids love powdered sugar on the waffles, let's get a sugar-shaker and let them put their OWN powdered sugar on themselves!!