OUTRAGED!!!

There are two magazines my local Babies R Us carries and gives out free, American Baby and Baby Talk. I was in there the other day and picked both of them up. I finally had a chance to read Baby Talk last night.

There was an interesting article in the October 2008 issue about a family struggling with a Down Syndrome baby. They did not know prenatally that their little girl was Down, but found out after her birth. The family talked about how bittersweet it was: the joy of having a baby girl, so sweet and precious, mixed with the grief they feel over her difficulties. As a mom of a special needs baby, I could totally related and appreciate all they were going through. I really appreciated the magazine for shedding some light on this "less than ideal" situation.

The family named their daughter after the husband's grandmother who had "escaped and fought the Nazi's during the Holocaust" (pg. 50). Oh how sweet, you say! Get this, in the next paragraph the father says to the doctors, "If we had known, we would have terminated." (pg. 50)

Ummm, is it just me, or does something not seem right here? They would have terminated their baby based on the fact the she has Down Syndrome, yet applaud his grandmother for surviving the Nazis, who wanted to "terminate" her for her "unacceptable-ness"??!! I was just speechless and needed to read it again to make sure it said what I thought it did.

When we found out that Rachel would actually live, we asked Dr. Giles if we would not be encouraged to terminate. He said that we still had that choice and there were parents that would. We found that to be LUDICROUS!! The thought never even took enough root to be plausible.

I will be honest, it is difficult living with a child with "special needs" (and Rachel's needs aren't even that demanding right now), but the joy that I get seeing Rachel happy and smiling, the absolute joy that she brings to our life... nothing can terminate that.

Chunky Monkey

Rachel got her hip brace today and has not fussed a bit about it. There was time for them to make one foot brace. We'll have to go back next week for the other.

She is getting so chubby and cute! She is in the 95th percentile for weight. She looked so cute today, I snapped a picture of her. Don't you just want to eat her up??

At Just the Right Time

We spent yesterday in Pittsburgh at Children's Hospital visiting the Spina Bifida clinic with Rachel which we do every three months or so. It was a very good visit. Everything with Rachel seems to be going well.
I know that some of you have been following our concern over Rachel's hips. The orthopedic doctor at CHoP explained it well to us. Because of the SB, the muscles that hold Rachel's hips in are paralyzed, so they can't do her job. Her hips will dislocate. He told us there is no "definite" fix. We could have her in the hip brace and it may work and then a year later her hips could dislocate again. We could do surgery and they could dislocate.. We could do nothing and they could be fine. I think that's one of the most frustrating things about SB, no two cases look the same and no two treatments may work the same. It is SO individualized, and, what may work today, may not work six months from now. It really is a step-by-step process.
I feel a little bit better, then, about Rachel wearing the brace, as strange as it may sound. I REALLY do not want her to have surgery, I want it all to be as non-invasive as possible. So, I feel that after talking to the doctor in Pitts, surgery may not be the best course of action.

That's the update on Rachel...here's the update on me.
As we sat in the waiting room for over an hour, I noticed a mom and a little boy (6) who reminded me of Benjamin quite a bit. The little boy was in a wheelchair, and since it was "Spina Bifida Clinic Day" it was obvious why he was there. At one point John took Rachel out into the hallway, so I asked the mom if I could ask her some questions. She was so kind and gave me such good words, I wouldn't necessarily call them "encouraging", but they were words of someone who had been through what we were embarking on. Her son's SB is extremely similar to Rachel's, same placement, same leg function. (They have to catheterize which we do not.) I wanted to get just a picture of what our live might look like in 6 years and she was there to help me.

I thought later about how she was in the right place at just the right time when I needed her. I was able to talk to her about, not just Rachel, but about me as the mom. That is EXACTLY what I needed yesterday and I felt so much better after doing it. I usually don't approach strangers and start a conversation, one in which I am in tears in, but she is just what I needed. I think it was a God-thing.

I had a present I wanted to drop off at a friend's house and I just hadn't gotten around to it. Today I was out and decided I would just do it. I am really an introvert at heart and to do something like that, out of the blue stop at some one's house, is NOT my thing. But I did it. As I stepped in her house, she shared with me something very serious that was going on RIGHT THAT MINUTE! I can't believe that maybe I was the right person at just the right time...I have been praying for her non-stop ever since. You don't know her name or her situation, but God does. Would you ask God to work in that situation? See, you stumbled on here, but you are just the right person at just the right time too!

Step By Step

Rachel gets her new hip brace this week. She will wear it 24/7 and after a month, will have another x-ray to see if her hips are responding. If they are, she continues to wear the brace. If not...I don't even know. But I do know that there is a possibility of surgery at some point if the brace doesn't work.

Would you please pray that she responds well to the brace and that her hips grow properly? Would you also pray that she does not need surgery? The less invasive the better.

It is a long process and we may not know the outcome for some time. But step by step...

To sleep, perchance to dream...

Last night was a bit calmer in the Mischler household. We all slept ALL night in our OWN beds, well, the beds we started out in. I slept in the end bedroom, and I guess the boys slept with John in our bed. Rachel slept all night inher bed too. AHHHH, sleep!

Tubby

Rachel is 6 months old today (well yesterday). I can't believe it's been six months already.

Since Rachel was born, I have been trying to lose the baby weight. I have been VERY frustrated. In six months, I have lost less than 5 pounds. When she was six weeks old, I joined the YMCA and went faithfully three times a week. I have followed the Weight Watchers eating plan, and in six months, I have lost basically nothing. I am SO FRUSTRATED!
I saw my chiropractor and massage therapist yesterday and was talking to them (individually) about it. My MT talked about stress. I said, "Yah, I've got stress." This pregnancy was extremely stressful, plus the fact that now, I have four kids, on top of that, one of them has a birth defect that requires extra care. My stress level is through the roof. On top of that, I don't get any sleep.

Here's an example of last night, which is pretty much the ordinary...
7:30- put kids in bed, leave light on so they can read for a while.
7:30-8:00 - run around cleaning up the messes from the day, get things ready for tomorrow
8:00 - get in bed myself and try to read
8:05 - John comes in to talk to me, put book away
8:10 - kids come in, put them back to bed
8:15 - kids come in, put them back to bed
8:20 - kids come in, put them back to bed
8:21 - turn out light in kids' room
8:30 - kid comes in saying he's scared
8:32 - put scared kid back in bed
8:32 - 9:00 - try to read some more
9:00 - my lights out, John wants to talk
9:30 - fall asleep
10:00 - wake up to John getting up
11:30 - wake up to John snoring
12:00 - wake up to John snoring, kick him out of room
1:30 - wake up to Rachel crying, go give her her pacifier, she falls back to sleep
2:30 - wake up to Rebekah getting into bed with me
3:30-4:45 wake up to Rachel fussing, let her cry for 20 minutes, then go tell John he gets to get up with her, lay there trying to get back to sleep, just as you are about to, Rebekah cries out and wakes you up, lay there getting more and more upset about the sleep you desperately need and are not getting making you more and more stressed!!!!!!
4:45 - get so exhausted but can't get back to sleep because you're just going to get up in an hour anyway and by the time you relax enough to get back to sleep it will be time to get up.... decide to just get up and get started on the laundry...

I know you don't believe me, but this is a typical night. Ever wonder why we don't answer our phone after 9 pm and usually not after 8 pm...it's because we're in bed tyring to get some sleep for the sleepless night before us.

And you don't even want to know what the daytime schedule looks like. Let's just say that to make one appointment for Rachel, I need to make AT LEAST five other calls to reschedule things. To make an appointment to get my hair cut, I've had to call and change it three times already and I still haven't gotten it cut yet.

Yah, my stress level is THROUGH THE ROOF...no wonder I can't lose any weight!!!!!!

The Hip Bone's Connected to the...

We went to Shriner's again yesterday. We thought it would be just a routine visit (WHY do I always trick myself...nothing is ever routine again!), but they found some problems with Rachel's hips. An x-ray was taken and it seems that her hips are not growing properly in their sockets. The doctor drew all over her x-ray and measured the angle of her hip bone to her femur. It should be under twenty degrees, but one was 38 degrees and one is at 42 degrees. They said that she will need to wear a Pavlik brace. (see picture)

She will need to wear this 24 hours a day for at least a year. Hopefully, it will do the job while she is still pliable, otherwise, she would need surgery.

I am a bit down about this this morning. We were not expecting problems with her hips at this point.

Field Trip to the Pumpkin Farm

Rebekah's preschool class took a field trip to a pumpkin farm today. Yes, it is only October 8th and we're bundled up like it's December for most of you.

A Brother's Love

Benjamin has an incentive program in his classroom. When he earns so many stars for good behavior, he can chose a prize. He came home the other day so excited. The very first thing was get out the prize that he earned, proclaming that he got it just for Rachel. I hope she always treasures her little green bear.