Rachel and I hosted a play date at our house last Saturday. It was supposed to be held outside but it was already 80 degrees by the time it hit 10am. Instead, we moved the coffee table to the wall and put down a quilt in the center of the room. I think we had 9 moms and 10 children in our living room. It was a bit tight but it was fun. The babies in the group that came on Saturday range from 10 months to 2 months old. Unfortunately, Rachel was someplace in between the 2 month old and the 6 month old as far as her skills go. It's absolutely amazing how fast the "typical" kids develop. No wonder people say "enjoy them now, they grow up so fast!", because they do! These kids are already crawling around and standing and sitting easily. As much as I love this playgroup, I don't know how much longer we will be active participants of it. Very soon these babies will be moving much farther than Rachel and she will be left in their dust. It's a sad thought. She is my joy though. I told her the other day that her middle name should have been Joy instead of Jane. It fits her so much better.
(Rachel and my buddy, Jack)
Anyway, I was thinking about how sad it will be for Rachel not to have peers that are at her level anymore and I thought about starting a Ds playgroup here in town. I just didn't know how many babies were actually being born here. Then Sunday night I attended the Mom's Night Out which is hosted by the Greensboro Down syndrome group. We get together about once a month for dinner or tea or ice cream (which is what we did this night) to get out of the house and talk. It's a welcomed break for all, I think. This night three new babies attended! THREE! All boys, but it was so great to see them. Two of the moms are my age and their boys are their first child, just like Rachel. I felt like that was a sign to start the play group. So, I just need to pick a date and send out an invite with the help of the Greensboro Ds group coordinators. I know that all mothers want to feel normal. I want to have a "normal" life with my Rachel. I want play groups. I want "cutest baby" contests and sleep overs when she gets older. I want to participate in all things that parents of "normal" babies do. I also want a group where we can be ourselves and not worry about what other parents may think of our children and where they can play together on a matching level instead of worrying about milestones and ages. I really hope that other mom's will want to participate in this group. I think it will be a good thing.
It's getting easier to get her to smile for the camera!
And this is what happens when a baby outgrows her playmat...
My brother (the businessman) and my Sister-in-Law (the creative mind) have their own business. While they were here at the end of last month, they took some video of Rachel. It's been edited down and set to music. They did a FABULOUS job. I hope you enjoy it as much as we do. **don't forget to turn off my music before starting the video!
We spent the day at Brenner Children's Hospital today. First up was the follow up with her Surgeon. Rachel was in a good mood and played peek-a-boo with her blankie. She had fun trying to kick it off too.
Then she crinkled the paper on the exam table.
And played with daddy.
Dr. P. said she looked great and to come back in another three months, when she turns a year old. If all is well after that, we never had to see him again! Yay! He is a great guy but I will be happy to cross him off her list of doctors she sees regularly.
We had a little wait in between appointments and Rachel got a nap in. It was needed. She was totally out in Stephen's arms for 45 minutes.
Our next appointment was an ultrasound on her kidneys. She had one done three months ago and the doctor just wanted to see how they were doing. Then we went out to the waiting room to wait for our next doctor's appointment.
We met with the doctor after the ultrasound. As we waited, Rachel played with the paper on the exam table again.
When the doctor came in, we were told Rachel's kidneys were growing fine and that both were just about the same size. One was smaller than the other last time. She also said that there were some bright areas on them and I guess that means damage but they think it's just old damage (from the TPN) and that it will continue to get better. They put a bag on her to collect some urine but it leaked and now we have a bag here at home in case the doctor really needs a sample. Fun. Heck, we've collected poo, why not round it all out with pee? She also had some blood taken and we will hear back about that tomorrow. The woman who took her blood is a PRO. She was able to not only find a vein in Rachel's chubby arm, she didn't even make Rachel cry when she put the needle in. It was the most amazing thing I think we have ever seen!
At the end of the day, we were all tired. Rachel sacked out in the back of the car and Stephen dozed next to me as I drove us home. I am thankful we don't have another day like that for another three months.
P.S. have you noticed her tilt-a-head is back? We aren't sure what that is about but I guess more stretching is in her future. I thought we had beat it!
Rachel had her sleep study follow-up today. I was expecting the doctor to tell us nothing is wrong and that we are crazy. Ok, maybe he wouldn't say we were crazy. So, Dr. K. likes to talk. Stephen and I have a really hard time getting a word in edgewise. We think maybe he is afraid of forgetting what he wanted to say and won't let us say anything until he is ready. But, Rachel loved his voice and was mesmerized so she was calm and quiet the whole appointment.
Basically, as we thought, Rachel has apnea. Dr. K told us that, for an adult, having 1 apnea episode an hour is bad. Rachel has 4.(something) episodes an hour where she either stops breathing or is breathing too shallowly. He said that because she has Ds that he can't hold her to the normal chart. She would desat to about 83% occasionally as well, which is not good. I also think that if the sleep study was done at our house and she slept the way she usually does, they would have found it to be even worse than that. Unfortunately, there is nothing we can really do. Her tonsils and adenoids are a normal size. Most of the time when kids have apnea, their tonsils and adenoids are very large and once they take them out, the kids do much better. So, surgery is not an option. There is also CPAP. He said that it would be impossible to get her to keep it on during the night so that is not an option either. All we can do is keep an eye on Rachel to see if it gets worse. We are going to have to have another sleep study done on her in 6 months (Stephen's turn!). Dr. K. said that he doesn't think she is in any urgent medical danger.
He is happy we are seeing Dr. H, the GI doc at Brenner's, and said that he will hopefully help get her reflux under control and maybe then we will see more of an improvement in her sleeping issues. I am not sure if it will help or not. When we hold her on our chests to rock her, she stops breathing and constantly is moving to keep her airway clear. She ends up tilting her head back with her mouth open and we have to hold her head in our hand to keep her from falling over out of our laps. She never used to do this, this is something that has developed since the sleep study and it makes me nervous. I asked him about her sleeping on her stomach too since she has found out how to do that. I was concerned about the oxygen saturation levels and if sleeping on her stomach would make it worse and lead to SIDS. He said there was no medical proof that the low oxygen levels would lead to a SIDS death.
So, there you have it. We have proof something is wrong but no real solution for it at this moment. We just hope she does grow out of it. I hate the wait and see approach.
This weekend we had some visitors. My Aunt B and her husband, Karl, stopped over for the night on Friday on their way to the beach. We had some beers and grilled out. It was a nice time. Since Rachel was asleep by the time they got in to town, they only got to see Rachel very briefly the next morning before they left. And, of course, I didn't think to take a picture.
Sunday, my dad, Grandpa C paid us a visit. Well, more like paid Rachel a visit. We all know who he was here to see. She took some time to warm up to him again (like all people) but by today she was all smiles. She really likes to be tickled, oddly enough.
We have a lot of things coming up that I'll be posting about. We'd like to take a trip to the local pool and attend a play date on Friday. She has a PT appointment with our favorite PT, Lisa. Lisa hasn't seen Rachel in about three or so weeks so I can't wait for her to see Rachel and all the progress she has made. We have the sleep study follow up on the 22nd where we will find out the results, a follow up with her surgeon on the 24th and also on that day, a follow up ultrasound and meeting with the Nephrologist. Then another play date at our house and her nine month check up on the 28th. Can I tell you how excited I am for all these appointments?? I can't wait to show all these doctors how well she is doing and I can't wait to see how big she has grown. This month is going by so quickly. I'm already thinking about Rachel's First Birthday Party and that just seems unreal. How can it be coming so fast. Didn't I just have her?
For Rachel, this last week has been one of amazing accomplishments (at least in my eyes). It seems like she grew up a months' worth right in front of my eyes: she's half out of her 6 month clothes and half in her 9 month clothes, she can hold and drink from her bottle for a little bit, she is eating solids and loves peas, carrots, green beans, pears and sweat potatoes, she even tries to grab the spoon and feed herself, she blows raspberries like they are going out of style, she figured out how to turn on to her stomach in her crib, she is getting her pudgy knees under her belly and is fighting to crawl, she loves to "swim", and sit and stand. Every second of the day I'm watching her and going " I can't believe she just did that!" One of her PT's came today to do a small evaluation and she was really impressed with Rachel and how far she has come. The PT commented to me that Rachel is "motivated." Yes, yes she is. Rachel doesn't want to sit still. She wants to move, she wants to see and she wants to try everything she can get her chubby little hands on. Putting a diaper on her is a wrestling match. I'm surprised I can get it on straight half the time. This little girl is everything I ever wanted in a child. If I could sum her up in one word it would be - spirited. I know that will come back to bite me as she gets older, but right now I'm thrilled.
Her uncle Mike and aunt Mer gave Rachel this learning table as her Baptism gift back in February. Just a couple days ago she realized that if she hit the keys she would get music. But she doesn't just continually hit the keys, she will strike once and wait with her hand in mid-air until the song is done playing and only then will she'll hit it again.
Ever since we brought Rachel home she has been fascinated with our entertainment system and center. Now that she knows she can move, she likes to roll herself over to it and kick buttons with her feet and as in these pictures, use a toy to hit the buttons.
Never thought I would be so excited to see our baby hit our electronics.