Sweet Pea Update

I've been neglecting this blog more than I should so here is a quick recap of some of the things we have been up to recently.

Disneyland:  This was a wonderful day!  Sweet Pea was spoiled rotten by her aunt, uncle and cousins all day long.  She walked a ton and loved watching everything around her.  She went on a lot of rides and didn't have any problems in any of them.  Mommy was more afraid on Astro Orbitor than she was!  My camera was too slow to capture many good shots and I haven't gotten around to copying Uncle A's yet so you will have to settle for these:







Teeth:  Wow!  Sweet Pea has been having more teeth appear regularly for what seems like months!  She is now up to 11 that have broken through and at least 2 more are close.  She has her front four (central incisors) and her first set of molars completely in. The bottom lateral incisors have broken through (left first and then right came in) and the top are working on it.  The biggest shock was that I saw her bottom left two year molar has come through!  She doesn't even have all of her front teeth and she is got another molar?  That doesn't seem fair to her!  She deals with it quite well and only has issues at night and we give her Tylenol on the bad nights.

Play dates: We have been going on a lot of play dates and loving every minute of them!  I figure I need to get in as many as I can before the new baby arrives and makes life a bit more challenging.  Sweet Pea loves hanging out with other kids and is bored stiff at home so this is a favorite activity.

Park time: If you aren't local you may not know this, but we have been having summer weather for about a week now.  We took advantage of it and went to a couple of parks.  Sweet Pea played in sand at one of them and didn't try to eat it!  She ate a little when it was stuck to her hand when she put her hand in her mouth, but she wasn't intentionally trying to eat it which made Mommy very proud.  She is learning how to scoot forward to go down the slides, but her shoes still act as brakes and that makes going down a challenge.  She sure loves the slides though and is good at climbing the stairs to get back up.  This new skill will really be helpful when I have a little one strapped to my front soon!

IEP Training: I won't be able to attend the upcoming IEP training on the 29th so I'll need to try to find another one to attend before September.  I'm sure something will be offered since so many groups offer them in the LA area.  That is certainly a benefit of living in the Los Angeles area!  There are so many people and amazing resources at our fingertips!  I feel for the people that don't have that available to them.


Support Group:  I attended our local support group meeting this week and our guest speaker has taught sign language and been a deaf interpreter for many years.  She had a couple of helpful tips that I thought I would pass on:

• Don't just sign to your child.  Sign when you are speaking to your spouse and other children as well so that they realize that this is a way to communicate with everyone.
• It takes 500 times of seeing a sign for the typical kid to pick up a sign and 800 for a deaf child.  She didn't have any stats for a child with DS, but I thought it was interesting none the less.  I think this stat was for when they were just starting to use signs because it is clear to me that Sweet Pea picks up new signs now a lot faster than she used to.
• Sign language can even be useful long after they are talking for times where you shouldn't be talking, but want to say something...she gave the example of being at a party and signing potty to her husband across the room so he knew where she was running off to.

I think that is about it for now.

Cord Blood Banking

I need some advice...we are about a month away from delivering our newest baby girl and we have been considering banking her cord blood.  I don't think we would even be considering it if Sweet Pea didn't have Down syndrome.  We've read all too often about how her chances of childhood leukemia and other diseases are significantly higher than those of a typical child.  We have seen too many sweet little girls (it's odd that I can't recall any boys) be diagnosed with that nasty "C" word and require round after round of treatment.  Most have had happy endings, but others are still fighting the battle and we continue to pray for them.  It all creates too many fears to even write about.

I know that some of these fears would exist even if Sweet Pea was typical and had typical chances of having a medical issue, but they are certainly magnified because she isn't typical and her risks aren't typical.  However, the cost of cord blood banking is quite expensive and it seems that the banking companies are succeeding by feeding off of parental fears.  It's like they are saying, "How can you put a price tag on saving your child's life?  Is $2,000 more than your daughter is worth?"

The thoughts going through my brain are these:

• Am I throwing away $2,000 immediately plus $125 every year after?
• My daughter is very healthy and why should I think that she will be anything but healthy in the future (and my newest daughter will be too).
• This one is foolish, but still...am I jinxing her by doing (or not doing) this?

I know that if we don't bank the cord blood and something happens where we could have used it we will certainly be beyond mad at ourselves.  However, the chance of that happening is VERY small, but it is still there.

If I was still working full time and bringing in a decent salary then this really wouldn't be much of an issue.  But that isn't how it is these days.  We are trying to live off of one salary and even that salary has been lowered from what it used to be.  Taking a 60% decrease in income is hard, but it was a choice that we made that we truly believe will be best for both of our girls.  When we made the decision we knew that there would be things that we couldn't afford and we were going to have to make due without them.  But is this one of those things?

What would you do?

I can't leave this posting on such a depressing note...so here are some photos from yesterday.

Sweet Pea doesn't interact with my belly normally so I had to try to capture this moment when it happened.  It's like she was listening to her sister:

 When is she coming out to play?

And finally, just a short video clip of her chatting with me:

Sleep Study Recap

I'm very lucky that there was a change in plans today.  The IEP training that I was supposed to attend got pushed this morning to the weekend of the 22nd!  Needless to say, I was thrilled!!!!  Daddy let me sleep for a few hours when I got home from the hospital a

We survived the sleep study!  I don't know who it was harder on...ok, it was harder on Sweet Pea, but it wasn't easy on Mommy either!

We let Sweet Pea have her usual afternoon nap and then kept her up until we left for the hospital a little after 8pm.  I gave her all her favorite car toys and even had the overhead light on right over her car seat, but she still fell asleep within just a few minutes of driving.  There was minimal traffic and so we got there just a few minutes early.  Went to admissions and signed in and sat down next to a mom and her son.  My DS radar is always on these days and I thought that this boy had DS, but wasn't positive.  At this point I started trying to wake Sweet Pea up and that got the mom and I starting to talk and sure enough, he did!  He was very cute, four years old and was in for his annual sleep study.  He has sleep apnea and so they do this every year for him.

Here is a photo of Sweet Pea trying to figure out why I've just woken her up and where exactly we are:

When we were taken into the sleep lab, Sweet Pea and I were sitting in her room twiddling our thumbs for a little while.  I started talking a bit louder to Sweet Pea about how I know she was tired and I'm sorry for keeping her up, but we have to wait for them to tell us what to do.  Luckily the nurse heard me (he he he) and informed me that I could let her go to sleep.  Why she didn't tell me that when we first went in the room?!?!  Anyway, I changed Sweet Pea into her pajamas and gave her some milk and she crashed right out on the big bed.  She has been looking so big to me recently when she sleeps in her "big girl bed" (aka crib mattress on the floor), but boy did she look small in these beds.

A short while later the nurse came in and started hooking Sweet Pea up to the machines.  She started with the heart rate and oxygen saturation sensor on her toe and taped it up her leg so that she could stay in her pajamas.

Sweet Pea was pretty good while the nurse stuck more and more sensors on her.

She squirmed a lot when they put the nasal cannula on and ended up off to the side:

I couldn't believe how many wires and sensors there were!

When the nurse was done she put the blanket on Sweet Pea and that was it:

I don't know why it surprises me, but this was all the equipment that was in the room.

Here is my understanding of what a few of the sensors were for:

• Straps around her chest: measure when her chest rises and falls as she breathes
• Chin sensors: in the deepest stage of sleep the chin completely relaxes
• Many of the sensors on her scalp: help determine the stage of sleep
• Nasal cannula: measuring how much CO2 she is expelling

This was my bed that made a fair amount of noise when I would turn over, get up or lay down.  It wasn't as bad as I feared, but it certainly wasn't comfortable.

The wires started out fairly organized with a decent amount of play in them.  By morning, things were completely twisted up.

The reason that we were doing this sleep study was to ensure that she doesn't have sleep apnea or other issues that contribute to her restless sleeping.  We moved Sweet Pea out of our room and into her crib at just a few weeks of age because she would cry out in her sleep and wake us up, but not really wake herself up.  Anytime we have to share a room with her we end up sleeping fairly poorly because she still pulls the same stunts.  Since she will be sharing a room with her sister in a couple of months we really wanted to get to the bottom of these sleep issues if there is something that needs to be done about them.

There was very little sleep time for me as throughout the night either Sweet Pea would start fussing and I would get up to pat her down before she fully woke up and ripped off sensors or the nurse would come in to fix something that Sweet Pea had managed to dislodge.  The nurse explained that she would only come in if a sensor was really needed and that they couldn't just utilize the same sensor on the other side of her face.  Turned out that was more often then I had hoped.  I think I got about 30 minutes of sleep for each hour that we were there and even that wasn't very good sleep.

Sweet Pea woke up very early...around 5am...and I thought I had to try to keep her asleep as I had been told to do during the night. That wasn't working well!  Every once in a while she would suddenly take off for the base of the bed and in the process pull out her O2 saturation sensor or try to climb out the side of the bed to get closer to the equipment on the table next to her.  Finally the nurse came in at 5:45 and said that I could let her get up.  Sweet Pea wasn't real thrilled with the situation that she was in, but dealt with it pretty good.  This poor girl was just covered in sensors and wires and I felt so bad having to corral her in the bed.

Finally around 6am the nurse started taking off the sensors.  It was a complete rats nest of wires!  The nurse said that Sweet Pea wasn't her most restless patient ever, but she certainly was near the top of the list!  I had to laugh a little as there was a part of me that had feared that I was just crazy and overreacting about how restless she was and maybe it was normal for kids to be that restless.  The nurse reassured me that she had seen many a kid come in, first children in particular, with parents that were super worried about how restless their kids were and when she watched them during the night they were so calm.  Her restlessness will hopefully be nothing to worry about, but Daddy and I just want to be certain of that.

Sweet Pea was REALLY good as they were taking off the sensors.  The tape that was in her hair and had gotten quite tangled didn't even make her fuss.  The only part that she cried about was the tape that held the nasal cannula in.  When the nurse ripped that off she lost it!  I don't blame her either!  The nurse had to put extra tape on it during the night because Sweet Pea had pulled it off.  Now there are broken blood vessels on Sweet Pea's cheeks that mark where some of the tape was.

All in all it was a good night and I'm glad to have it behind us.  It will be 2-3 weeks until the report is ready and it will be sent to our ENT.  I need to ensure that our next appointment with our ENT is after it should be ready so that I get the details in person.

And for those of you wondering how it is that I am writing this posting since I should be in an IEP training...we got home about 6:45am and by 7am I was in bed with Daddy taking over care of Sweet Pea for what I thought was going to be 45 minutes before I had to get up and get ready to head out to the training.  When 7:45am came and Daddy brought Sweet Pea in the room I thought it was to wake me up.  Turns out that we had received a call from the lady conducting the training and she had come down with the flu and needed to postpone it until the 22nd and wanted to confirm that was alright with me.  Absolutely!!!!  So, I got to sleep for just under 3 hours instead of 45 minutes and now I will get to go to a friend's first birthday party with Daddy and Sweet Pea this afternoon.  It's looking like a good day!

Big Weekend Ahead

This is going to be a busy weekend for us.  I'm not sure I'm ready for it...actually...I am positive that I'm not!

Friday night I will take Sweet Pea to the hospital for a sleep study that starts at 9pm.  They told me to not have her nap that day and have her still be awake when we arrive!  Ha ha ha!  This girl doesn't go without her nap and since the hospital is 45 minutes away, if we keep her up until 8pm she will be crashed out 5 minutes into the drive!  Oh well, we will do the best we can.  It will be interesting to see how this goes.  We are supposed to be done at 5am, but if she is still asleep then they won't wake her up.  I'll be "sleeping" right next to her in a chair of some sort so that will be interesting in and of itself!

Saturday morning I have to be at an IEP training 45 minutes from home...the opposite direction of the hospital by 9am.  The training is at least 6 hours long and from what I hear there is a ton of information covered.  It will be the first complete IEP training that I've attended.

The topper on the weekend, in every aspect, is that we get to go with Sweet Pea's favorite cousins (and their mom and dad too, but seriously, they don't rate in Sweet Pea's eyes compared to the boys) to Disneyland on Sunday!!!!  This will be her first trip to Disneyland and I am extremely excited!  I hope that she enjoys it as much as I'm envisioning.  For those of you that have been there with a little one...what advice do you have?

Sounds like an insane weekend to me!  I am exhausted before it even starts so we will see how I am by the end of it.  Hopefully I will be able to get a little sleep tonight as this insomnia that has been plaguing me is really getting annoying.

To give you something besides my narrative of what is to come this weekend...here are some videos and a picture from this past weekend.  We took Sweet Pea to the park before it started raining.  This was the first time that we had her actually walk to the park!  The park is only about 2 blocks away, but we have always thrown her in the stroller when we go.  I'm trying to have her walk more and so I thought this was a good idea and luckily I wasn't completely wrong.  She walked a little over half the way and then Daddy carried her until we were basically there.  The Juppy really is helpful!  She tends to lean forward more than she should when she is in it, but we don't use it too often so I think as with so many other things...moderation is the key.

Here she is walking to the park.  She had gone almost a block at this point.


Here is a video of her walking into the park:


She is now climbing the steep ladder without hardly any assistance.  Daddy is there for safety more than anything.  Enjoy this video clip:


And finally some video of her sliding down by herself.  I never get enough of her giggles!

Wordless Wednesday: Sweet Pea Playing Catch with Kodi

Kodi is training her early...(click here to watch video)

She Slept Great!

A quick update:  Sweet Pea went to bed last night in her big girl bed without any issues and around 3:45 I heard a thud and then a few more thuds.  I went in to her room to find her sound asleep on the floor with her seahorse not far from her head.  She had thrown her seahorse and probably went out after it, but fell right back asleep.  I picked her up and moved her back into her bed and she didn't flinch.

At 6am we started hearing her again.  I was clearly not fully awake because I thought she was talking and playing in her room with the mirror closet doors.  Daddy was much more awake and informed me that she was in the living room playing with her new cookie jar toy that speaks quite loudly.  He was kind enough to get up and let me sleep for a while more.

I picked up a baby gate from my sister's house this morning and we will be putting it at her door so she can't get out of the room without us letting her out.  Having her wander the house is a scary idea!  Let's hope tonight goes just as smoothly as last night!

Update: Sweet Pea went to bed again tonight smoothly!  Keeping our fingers crossed it continues through the night!

Big Girl Bed

Guess who is sleeping in a big girl bed for the first time tonight?!?!

With the new baby girl making her appearance probably in about a month, we needed to get serious about our plans for their room.  It's a very small room and we don't really have room for two cribs (we can make it work if we have to, but if we don't have to life will be easier) so we are trying to get Sweet Pea to sleep on a crib mattress on the floor.  It's close enough to the floor that if she falls off it won't be a big issue.  We do have a bed rail on one side to help keep her in since she moves around a lot in her sleep.  The hope is that she will sleep in the bed and not get up and play all night long.  We removed all books and toys from the room, but there is still a changing table with lots of blankets, burp clothes, etc that she can pull off one by one as she is so good at doing.  Unfortunately, the timing on this transition could have been better!  She has been waking up before 5am the past couple of days and we have been able to ignore her giggles because we know she is locked up in her crib.  If she does that again in the morning I'm not sure what we will do!  I guess we will just keep an ear out for chaos erupting!

Please think VERY positive thoughts for us tonight!  It could be a very long night or a very early morning!