Friday, January 29, 2010

Happy 10 Month Birthday!

Sweet Pea is 10 months old today!

Hard to believe that it was only 10 months ago when we were told that she has DS.  The rug was pulled out from under our feet, but we have learned how to regain our balance for the most part.  We might be described as drunk...but we are at least standing again.

Here are a few of Sweet Pea's milestones that she is doing at 10 months old:
  • Rolling around to get to toys (including her doggy)
  • Can get down from sitting by bending her legs and lowering herself on her arms to the side
  • Scoots backwards (not a ton, but a fair amount)
  • Loves to receive lots of zerberts from Mommy and Daddy
  • Likes listening to songs...even though Mommy can't sing well
  • Still enjoys blowing raspberries (even though Ms. Sara and the rest of us wish she wouldn't) but definitely not as much as she did a month ago
  • Enjoys laughing with Mommy and Daddy and showing us her big smile
  • Favorite toy is still the light up musical star by Baby Einstein (This toy has gotten us through so many therapy sessions!)
  • Enjoys rolling onto her belly when she sleeps
  • Still sleeps on an incline and winds up at the bottom of the crib many mornings
  • Goes to bed by 7:30pm and normally gets up once for another bottle and then gets up around 6am
  • Favorite food is still cereal (both rice and oatmeal) and enjoys watered down juice, but not a big fan of water yet
  • Still only has one bottom tooth, but the other one should appear any day now
  • Sitting is her favorite position
  • Pulling down her glasses might be her favorite hobby and she gets extra joy out of the frustration it causes Mommy and Daddy
  • Weighs 17lbs 3oz and has lots of rolls still
All in all, she is doing really well and Daddy and I are very proud of our little Sweet Pea!

We love you Sweet Pea!  Happy 10 month Birthday!

Wednesday, January 27, 2010

We Did It!

And I do really mean WE did it. I may be selfish, but the sedation process for the MRI really was hard on Daddy and Mommy too! She was a trooper through it all and only cried for about 30 minutes as she was coming out of it. She has been great since a little after 1pm. We have to keep an eye on her, but they really don't expect anything at this point. We are home and Daddy is trying to catch a nap while Sweet Pea and I eat and play a bit. She hadn't had any food since 3:30am so I'm surprised that she is not hungrier, but we are going to feed her every couple of hours since she isn't so good at telling us when she is hungry. Or if she is good, we are bad at reading her signs.

So here is what the process looked like for us today. We got the call from the nurse last night informing us that they had changed their policies and now she could have breast milk until 5:30am and formula until 3:30am. We decided that since we have been told that her stomach is slow to clear we better be cautious and give her breast milk at 3am. Daddy was nice to Mommy again and woke up at 3am and fed Sweet Pea a bottle of breast milk and she downed the whole thing. Good thing too since that was the last time she ate until 2:30pm!

Of course the day she decides to sleep in is the day that we have to leave the house at 7:15am! She woke up about 6:45am and we hit the road to the hospital at 7:15am. We checked in a little before 8:30am and were taken into the initial prep area around 8:45am. Sweet Pea was weighed and her vitals were taken. We changed her into a lovely hospital gown and put her in a fresh diaper. Then we went into the real prep area where they couldn't figure out if she was only getting gas or IV sedation also. They were waiting for the anesthesiologist to finish with another patient to come let them know since the nurses heard different things.  This didn't instill a lot of confidence in us! We tried to pass the time by taking a few pictures and Sweet Pea is turning into quite the ham for the camera!

Anyway, they ended up just giving her gas which supposedly is easier on them. We waited and waited in that prep area and finally just before 10am they took Mommy and Sweet Pea into the MRI room and put the mask on her and within 20 - 30 seconds, she was out. I didn't think it would be hard to watch, but she was fighting them as they were trying to keep the mask on her mouth and at the same time attaching all the vitals. My eyes watered, but I held it together. I kissed her right before she was out and then I had to leave.

Daddy and I spent the next 2 3/4 hours just waiting for the pager (like they give you in restaurants when there is a waiting list to be seated) to start blinking its lights. The first 2 hours went pretty fast, but the last 45 minutes dragged on and on...especially once the 2 1/2 hour mark had come and gone. That was the time that they had told us it would take. So when the magic pager started flashing its lights, we quickly went to the recovery area and there was Sweet Pea still pretty much asleep. She wasn't crying too much yet, but that quickly changed. We picked her up and tried to console her for the next 30 minutes without a ton of success, but I'm sure that what we were doing was better than just letting her be. The poor girl was having a hard time coming out of it, but once she finally did, she started looking around and staring at her hands like she was on drugs. It was cute and we were just glad to have her back in the almost real world. We got her dressed and were able to leave a little after 1:30pm. Not too bad!

Thank you to everyone for your positive thoughts in helping us get this darn MRI over and done with. Now the waiting game begins. The radiologist will have his/her notes in the system by tonight so our cardiologist should get the results tomorrow, but since our appointment isn't until the 19th, I don't expect to hear anything until our appointment. Our ENT and GI will also be looking at the results and we see them on the 11th so hopefully we will at least get a glimpse into what the results are from them. I'm not sure though since it isn't their area of specialty. Let's hope though because this mommy loves to drive herself insane with worry!

That is about all the news we have for the day. I hope everyone is having a good day!  Hopefully Sweet Pea lets Mommy get a nap too! Yes, I couldn't sleep very well because I was worried about today. So glad it is all over and it wasn't bad at all!

Love you all!

Tuesday, January 26, 2010

Thank You & Wish Us Luck!

I have shared my blog with a few other bloggers on this T21 journey and I want to say a huge thank you to them for their strong words of encouragement and support. It means the world to me to know that I have their support as their blogs have helped me so much.

The other thing that I want to share today is that we would greatly appreciate everyone’s positive thoughts and prayers for Sweet Pea tomorrow. She has to have a 3 hour MRI and it looks like she is finally healthy enough to get it done. Yes, this is our third time trying and we are really hoping that we don't get turned away again! It's going to be a very long and hard day for all of us as we can't feed her after midnight and don't have a clue what to expect tomorrow. I've heard that it isn't fun to watch your child come out from the effects of sedation and I can only hope she does as good as can be expected. It breaks my heart, and Daddy's even more, to see her in pain! I don't think she will be in pain, but disorientation or whatever it is can't be fun for her. So please keep us in your thoughts tomorrow and I'll provide an update once we get home.

Many of you probably don't know what the MRI is even for...well...neither do we really. We had an upper GI test done in August and it showed an indentation on the esophagus. The exact wording on the report is "Abnormal impression along the posterior aspect of the esophagus differential diagnosis includes aberrant right subclavian artery versus double aortic arch." The radiologist recommended to our GI doc that we have our cardiologist (yes, a lot of docs) take a look at Sweet Peas heart which we did in October. During that appointment they did another echo and they didn't see any evidence of a double aortic arch which was wonderful news. However, the doctor wants to ensure that there isn't something wrong that the echo can't see so he is having Sweet Pea undergo an MRI of the head, chest and neck. We had the first MRI scheduled for mid November and she had a cold so we weren't able to do it. Then in December she still had a cold so we couldn't do it again. Now we are REALLY hoping that she remains healthy for the next 24 hours! We will then have to wait until the 19th of February when we meet with the cardiologist. Hopefully we will hear something tomorrow, but I'm not holding my breath. Again, the cardiologist is fairly certain that nothing is wrong, he just wants to be 100% sure and this is the only way to do that apparently.

Wish us luck!!!!

Sunday, January 24, 2010

Sunday Thoughts

This entry may not be of much interest to my family and friends, but if anyone from the DS community ever reads this they might be able to use something from it...

This morning Sweet Pea and I went to a playgroup that we attend monthly that is for kids with DS. It's at a local therapy center and so they have a swing, lots of mats for easy rolling, a ball bin, etc. They have a couple therapists that volunteer their time and it's always been very fun and informative. Today was no different.

We start the group with circle time and they sing a couple of songs. Then they broke into two groups (walkers and non-walkers) and we started in the room with the mats. We asked many questions of the PT and she showed me a few new tricks. She hasn't seen Sweet Pea in a couple of months and was very happy with the progress that she is making. Then we went into the other room with the big swing hanging from the ceiling and we were able to have Sweet Pea sit in the swing and then kneel in the swing. She loves swinging so it was a lot of fun. Swinging is so good for our kids as it is a whole sensory experience within itself. The PT that was in this room taught me how to hold her while we swing with her on regular swings. Let's see if I can explain it...

I would have sat on the swing and held her in my lap looking out so that she could see what was going on. The PT informed me that by doing this I would be allowing her to not use any muscles to hold herself up because she would just lean against me. Her recommendation was to have her sit facing me with either her legs around my waist or just sitting on one of my thighs with her legs hanging down. I should have my hands on her torso and lower them down as she gets better at balancing as we swing. Since there is a park nearby that has swings I am excited to try this out soon.

The other really cool thing that they did with Sweet Pea was put her on this 18"x18" skateboard type thing on casters. They rolled her all around while they held her waist and watched how she reacted when they would change direction and her balance would need to adjust. She did great! They then rolled her up a ramp and back down it and she loved it and was maintaining her balance really well. Once she gets more stable sitting on it they would have had her do it on all fours. It's something to think about recreating here at home. Here is a picture of what it basically looked like.
We like our current therapists, but I always like going to these playgroups because you get a different perspective and can learn a few more tricks to try. One other trick I learned today was how to practice kneeling with Sweet Pea. She currently sits on her feet a fair amount when we try kneeling, but she did push up a little today when we were doing it. The PT said that it was good to start that way because it was teaching her to bear weight on her femurs. We should sit with her in kneeling position using the couch with the cushion removed to allow her to hold on for support. She will then eventually be sitting upright with both her thighs and torso in a straight line. Once she can do that, then we should bring one foot up and have her down on one knee (as in a man proposing position). Alternate which leg you use so that they both get utilized. Eventually, she would then be ready to pull to stand from that position. We are learning how to break skill down into much smaller steps and it's amazing how quickly success can come once you do that. It takes persistence, but we always try to make the work we do with her be fun so she isn't really aware that she is working.

Disclaimer: I am not a PT or OT or any type of therapist...just a mom who is trying to share some of what she's learned to help others. Consult your own therapist before trying any of this.

Saturday, January 23, 2010

My happiness on a Saturday morning

So my morning started blissfully by my husband getting up at 5:30 with Sweet Pea and letting me sleep until 8am! Now that is a great man! But my morning has only gotten better from there...

Sweet Pea has blown me away recently! I wrote yesterday about some of the progress she has been making in the PT realm, but I left out 2 things because they seemed like they might have been just flukes. But this morning she has done them again so I'm thinking they are just newly emerging skills and not flukes. So now you are asking, "what is she doing"?

Scooting backwards! She lies on her stomach with her arms pushing her torso up and then brings her legs under her bum and scoots a few inches backwards! Daddy has seen her do this a few times, but this morning was the first time that I had seen her do it multiple times in a short period of time. Between her rolling around the nursery (getting covered in doggy fur) she would try the scooting. It was so cute! We are still a long way from actually crawling, but I love the first signs that she is thinking about it.

Getting from sitting to laying! She had done this a couple times in the past, but by leaning forward and going into the splits and then continuing through to bring the legs to the back. I know...the rest of us say OUCH to the thought of that. Obviously that way is not the proper way and is only possible because of her loose ligaments. So we have been working with her to try to show her how to lean to the side on her arms and then bend her knees and turn the outside leg out and slowly let herself down. Last night she did it for us, but I really thought it was just a fluke. So when she did it again this morning I almost started crying I was so happy!!!!

These are two exciting milestones for us and we are really trying to enjoy these little successes as we know that they are slow coming. I've read it so many times, but it really seems to be true...Sweet Pea is going to take longer to reach many milestones, but that allows us to enjoy each and every stage more as they don't fly by quite as fast as they would for typical kids. It's one of the silver linings of this journey.

Thanks for letting me share my happiness on a beautiful sunny day in Southern California!

Friday, January 22, 2010

It's a good Friday

Our Fridays start with PT at 7:30am...well truthfully they start whenever Sweet Pea wakes up which is often 5:30am but let's pretend she is nice to mommy and daddy and sleeps in. Ms. C comes to our house and has recently been bringing this big purple peanut. It's an inflated peanut shaped ball. Sweet Pea absolutely loves bouncing on it and so we bring it out once she is frustrated with us trying to work with her. Currently we are working on:
  • Leaning to the side while bending her legs
  • Quadruped (basically on all fours)
  • Kneeling and keeping her knees together while doing this
  • Reaching while twisting her trunk
  • Reaching while in quadruped or kneeling so that her other arm is supporting her weight
  • Supported standing
We weren't making much progress back in December and so we dialed things back in hopes that she wouldn't be screaming through the entire hour session. Daddy & I started being more involved in doing the positioning, listening to her cues and trying to recognize when she is frustrated and when she has really had enough. We also started taking a few steps back in what we were trying to get her to do...Mommy & Daddy would read their "Gross Motor Skills in Children with Down Syndrome" book and follow the examples for the precursor steps to the skill that we were trying to develop. The very first weekend of this step back brought us tremendous progress and it's been continuing ever since. She stays in quadruped for 30+ seconds now and is showing great strides in the side sitting and supported standing. She now gets through about 30 minutes of the session without any real fighting. The remaining 30 minutes can be a struggle, but we call it a day when it's gotten to be too much. Daddy & I are happier and we believe Sweet Pea is happier as well.

Here are some pictures from tonight of her bending her knees (some more than others) and reaching for her ball & piano. She likes to do these things on her own and we have to learn to sit back and let her. When we try to bend her leg she stiffens it immediately. I think that once we show her it a few times she gets the idea in her head and will try it out when she is good and ready. Stubborn little girl...hmm...wonder who she got that from?

Thursday, January 21, 2010

Bath Time

Last night was a good night in mommy land. I had the best time giving Sweet Pea a bath! We often give her a bath in the little infant tub since she still fits in it and it's pretty darn easy that way. Well, last night I decided to put her into the regular tub without the safety seat because I was really hoping that she would start to splash soon. I always read about how kids love their baths and Sweet Pea seems happy during them, but not really having much fun. That just didn't seem right! So into the big tub she went and it didn't take her very long to figure out how to make some big splashes and she was having the time of her life! I'm not sure who was having more fun as I was laughing and smiling from ear to ear too! She is definitely going to be taking most, if not all, of her baths in the real tub now.

Oh, and apparently 16lbs isn't enough to keep her from floating away. I kept having to bring her back to my side of the tub so I could reach her in case she started falling over and before I knew it she was floating back the other way again. She didn't mind as long as she could keep splashing though!

Wednesday, January 20, 2010

Pediatrician Appointment

Today Sweet Pea had what is probably her 20th pediatrician appointment in her short 9 1/2 month life. The ear infection that we had ended treatment for on Sunday either never completely disappeared or another one is just about to get started. I think the terms she used were dull and red which I think meant that it wasn't a full infection yet, but her ears weren't clear either. That means we start another type of antibiotic and do that daily for 5 days in hopes of it completely clearing.

Since Sweet Pea is still a little congested and her cold is gone, the doc is worried that citric acid might be causing some of it and adding to the reflux. Her solid food intake has decreased in the past couple of weeks and Sweet Pea sees the food, gets really excited, but then only takes a couple of bites and starts turning her head and pushing away. Doc thinks that this could be because it hurts Sweet Pea to swallow the food. The thought of that makes me want to cry! Poor little princess! So, we are supposed to stop feeding her store bought fruits and do only fresh bananas, pears, apples and grapes. We can do the bananas, pears and apples, but the grapes are going to be an interesting task. She can't do the skins so either mommy has a lot of peeling to do (never going to happen) or maybe Sweet Pea can try mashed grapes through a strainer? We have to increase her liquid intake also so making juice out of the fruit would be helpful since she doesn't drink enough water to count. Spoiled little princess I know!

Daddy and I are frustrated at how many possible food allergies she might have and how there is no definitive way of knowing. The reflux has good and bad days so it makes it very hard to tell what is causing it. Also, she seems to be refluxing sometimes but not spitting up so we don't even know it is occurring all the time. Oh well, just another battle that we will continue to fight.

Let's hope we can get this congestion figured out quickly as we really don't want to have to reschedule her MRI yet again. This is our 3rd attempt!


Welcome to our world!

I've been reading blogs for a few months now and had toyed with the idea of writing one. Seeing as I'm still having a hard time adjusting to life with Sweet Pea, I thought this could be therapeutic as well as a great way to let our not so close relatives and friends keep up with Sweet Pea's life. I plan to write about the good, the bad and the ugly here so you've now been warned.

Let me start off by saying a huge thank you to all the ladies out there who have been so open and honest in their blogs about raising a child with Down syndrome and all the good and the bad that comes with it. Your honesty and courage has helped me get through these past few months.

The long story (I originally had this titled brief history...then I started typing and typing and…)
9 1/2 months ago we went to the hospital in labor. We were excited to finally get to meet this little person that had been growing inside of me for 9 1/2 months. We didn't know the gender as we wanted to be surprised and we really didn't care if we had a boy or a long as he/she was healthy is what I had always said. Once Sweet Pea was born my husband (let's call him Daddy in these blogs...creative I know!), was able to announce the gender once he spread her legs as she was being bashful. She was put on me as far up as she would reach as the cord was short. I was in awe that I was holding our little girl. Daddy cut the cord and Sweet Pea was brought up to my chest. I was holding her as the nurse was working with her. I was obviously high as a kite because I didn't realize that she was turning bluer by the second. Thank goodness for pictures to help me remember reality (thanks Mom for being so wonderful during the labor and after)!!!!!! The nurses took her over to the warmer and gave her oxygen and that is about when the extra staff started to come in. I wasn't really worried about her as I knew she was in great hands and she probably just needed a little extra help getting started. I had the best pregnancy and couldn't imagine that anything was actually wrong. Well, they worked on Sweet Pea for what seemed like ages, but were probably 15 minutes or so (haven't been emotionally able to watch the video yet to determine actual timelines) and then they said they needed to take her to the NICU. They brought her over to me to say goodbye and I jokingly thought, "Daddy's going to be mad" as I must have slept with an Asian man because Sweet Pea's eyes were slightly off from what I expected. I just laughed at the idea in my head and kissed Sweet Pea and Daddy and they headed off.

My mom brought in my dad, sister, brother-in-law and 2 nephews and they kept me entertained and happy for goodness knows how long. Then Daddy came back in followed by a doctor. His demeanor was completely off from what I was expecting. He didn't look at me and he didn't say anything, but there was something about how he put down the camera that made me freak out. My family very quickly exited stage left and the doctor asked Daddy if he wanted to tell me. At this point I thought Sweet Pea had passed away. I had no idea what was about to be shared. Daddy said no to the doctor so the doctor said, "Your daughter has Down syndrome". We thought that the world ended for us at that moment. Daddy and I just clung to each other in disbelief. I have no idea when the doctor left or if she said anything else, my world had stopped. Luckily, the doctor did go down the hall to where my family was and break the news to them so that we didn't have to. Warning: I'll be really honest here so stop reading if you don't want the truth...I wasn't sure if it was better that she was still alive or not. I had no idea what Down syndrome meant, I mean, yeah, I had heard of it and I knew that it was one of the things that we had gotten tested for early on in the pregnancy, but that was about it. In my head it meant nothing good at all. I cried and cried and cried as our perfect baby and the perfect life that we had known came crashing down all around me. Eventually I was able to go into the NICU to see her and this "lovely" photo was taken. You can see the shock written all over our faces! I'm glad now that this picture was taken, but at the time I was not so sure. It was about this time that I asked the nursing staff if they had any documentation on what Down syndrome was and to our shock they didn't, but they printed out some Google pages for us to take back to our rooms and read. I mean, this is a MAJOR hospital in Southern California and Down syndrome is the most common genetic disorder and yet they have no information to provide to new parents?!?! Wow! (Yes, this is something that I want to help change along with so many others of you out there!)

Anyway, those few google pages were the very beginning of what has been 9 1/2 long months of endless research and learning everything that I possibly could about Down syndrome, its effects on the body & mind and what we as parents can do to assist our Sweet Pea to achieve everything she wants to in life. I'll be continuing this quest for knowledge for the rest of my life, but I sure got a great crash course in those first few months. For those of you that know me, I'm a very analytical person and I make lists and spreadsheets and plan everything! Down syndrome was not in the plans! We have come a long way in our acceptance of reality, but I can't say that I'm across the finish line yet. I have my good days and my bad. I was actually able to write this entire entry without crying (my eyes wanted to a few times, but I never got past that very first step in the crying process) and that is a HUGE milestone for me. I'm a crier...what can I say.

Now I can say, at least most of the time, that I'm very glad that Sweet Pea lived and she brings so much joy to our lives! One big smile from her and all the worries and cares just disappear.

I'll be sharing more on her health as time goes on, but the short version (I promise this time) is that she is pretty darn healthy. No major problems just a few minor ones that we are working through.

Hugs & kisses to all,