Catch Up: Random Sweet Pea Cuteness

This should have been the first "Catch Up" post, but I forgot...
I've been horrible about updating this blog and I have so much to share!  I'm going to try to do a little catch up now...hopefully I can create a few posts tonight and post a new one each day for the next few days.

To start...here are some random cuteness photos of Sweet Pea







She loves the wagon! Even if it isn't going anywhere...










She looks so grown up here and it looks like she is saying "oh mom".  I'm afraid of what her teenage years are going to be like! 


Sweet Pea is becoming a climber!  She doesn't have the arm strength to get all the way up into her chair, but I think it is cute watching her try.


Sweet Pea crashed out hard one morning before school!  She was sitting there with her Daddy and all of a sudden she was out.  Needless to say she was a little late to school that day.

Catch Up: Easter

Papa Bear with his little Angel:





Mama Bear, Papa Bear and Sweet Pea


Sweet Pea pretending that she was actually going to eat


Sisterly love:








Angel enjoying some Mommy time


Mommy enjoying some Angel time too!


Angel often looks very concerned and worried...if I were in her shoes I would do the same!


This was a fun game of chase that had us rolling on the floor laughing as Sweet Pea swung the hammer as she chased her cousins.  Couldn't capture it very well on camera, but I think you get the idea...




Sweet Angel

Doctor Updates

Wednesday was a busy day.  We got a second opinion with an ophthalmologist regarding the surgeries that our regular ophthalmologist was recommending and I'm definitely glad we did.  The short version is that he doesn't believe that we need either of the surgeries that we were told we needed.  The doctor was very nice and said that he thinks our regular doctor is great, but in this situation, he doesn't agree with him.  He doesn't believe that the tear ducts are actually blocked because the eyes aren't watery ALL the time especially when she isn't wearing the glasses that rub her eyelashes.  He pressed on the sack (I am not sure that is the right word, but the area at the inner corner of the eye) and nothing oozed out so he doesn't believe they are blocked.  He says that because children with Down syndrome typically have more narrow passageways (we hear that all the time with her ears) that her eyes have a harder time draining.  They are worse when she has a cold because those passageways become even smaller with the swelling/mucous that happens when she is sick.  He actually would rather not do the surgery because if they didn't do it exactly right it would cause scar tissue which would make it even worse.

As for the strabismus surgery to correct the nystagmus...He didn't think that was necessary either.  He was happy about two things...1) That her vision is good enough for her to notice that it improves when she tilts her head back.  If her vision was poor then she wouldn't notice any difference and so she wouldn't tilt her head back.  2) That it improves when she is looking down since that is where most of our activities require our eyes...walking, reading, drawing, etc.  He said that they try to get peoples eyes to do what she is doing already and it wasn't worth messing with.  When we asked why the tilting back of the head helps calm the nystagmus he didn't know and had often wondered himself.  That was a little strange, but maybe it is just one of those oddities of the human body that we haven't figured out yet.

Our plan is to see our regular ophthalmologist again to review what this second doctor thought and make a decision from there.  To be honest though, I highly doubt we will be doing either surgery.

From that appointment we went upstairs to meet with an OT which is required before doing a swallow study.  We need to have the swallow study repeated since it's been a year since our original one and we are hoping and praying that she has improved and that we don't need to do honey thickness for all liquids.  The OT watches Sweet Pea eat different foods and liquids and evaluates the need for the swallow study as well as what exactly needs to be tested during the study.  After watching Sweet Pea eat baby food puree, a Nutrigrain bar, hard thick stick pretzels, honey thick milk and nectar thick juice she agreed that we should do a repeat swallow study, but that we should include a fatigue study as part of it.  That means that instead of just feeding her a few things with barium added to them as they watch what happens with the fluoroscope they will do that and then turn off the fluoroscope and continue to feed her regular food until she tires and then do some more food with barium and watch to see if anything different happens.  I'm guessing that if they see her aspirating during the first part of the study that they won't bother with the fatigue part, but hopefully there is nothing for them to see!  I'm really hoping, but I am not holding my breath.

While we were with the OT she mentioned that we might want to look into something called VitalStim.  I had heard this word a few times, but knew nothing about it.  Here is what the VitalStim Therapy website says about it:
"The VitalStim® Therapy System involves the administration of small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature.  The therapist determines which musculature would benefit from this facilitation through a patient evaluation.  Once the electrodes are placed and current intensity has been increased to a satisfactory level, the therapist commences traditional exercise therapy with the patient.  The patient exercises the swallowing muscles for periods of up to one hour while receiving concurrent VitalStim.  The VitalStim® Therapy System when applied in this manner, increases muscle strength, accelerates cortical reorganization, and increases the effectiveness of the exercise therapy."

Our current SLP is VitalStim certified, however not for pediatrics.  The place where we get our PT does have an SLP that is VitalStim certified so I am now in the process of trying to determine if we can see her and how to fit it into our crazy schedule.  From what I'm hearing we would do the therapy for about 6 weeks and then do a swallow study to see if there is any improvement.  Since we don't want to expose Sweet Pea to any more radiation than necessary we would want to do this VitalStim therapy before our next swallow study.  We are currently scheduled for the study on July 11th, but if we have to push it a few weeks to complete this VitalStim therapy then that will be worth it.

Thursday we went to the podiatrist and all was well there.  He was pleased with the improvement in her walking and with her gait.  He says it isn't perfect, but it's getting so much better.  Since the last time we saw him was in January before she was walking...duh!  Oh well...I'm just happy he is happy.

Daddy and I are very happy with all three appointments.  We will keep you posted on the VitalStim subject as we learn more.

And to celebrate the good news...here are some photos of Sweet Pea enjoying a cupcake from over the weekend:

Wordless Wednesday: Angel in Bumbo

Happy Mother's Day!

I'm the luckiest mom in the world to have these two adorable girls to call mine!



I know that today isn't all about me...I can't even begin to find the words to describe how much I love my mom. She is the most amazing woman I know! The love and support that she has provided to me and our entire family has meant the world to me.  I'm not sure I would have survived the last 2 years...much less the last 30 some odd years...without her!  She is my hero and I wish I had the words to express to her how deeply I love and appreciate her for all that she is and does. And my little girls love her as much as I do!  So to the best mom in the entire world...Happy Mother's Day!!!!

We went to the local mountains with my mom and sister for the weekend and it was great.  We got to visit with Mama Bear and Papa Bear twice which made the trip even better! I always love it up there and it seems that every single time that we go up there, Sweet Pea learns a new skill.  First it was standing up by herself, then her first steps, and now...hooking her booster seat straps!  Alright, so that doesn't compare to her first steps, but I had said just yesterday that I couldn't imagine her learning something new up there this trip.  She really likes to just prove me wrong!  This morning I got to sleep in a little and when I came out she was sitting in her booster and was practicing this new skill!  She needs help getting it unhooked (thankfully), but I love the concentration that she has when she is working on it!



Success on the left side


Working on the right (which she did end up getting later)...


My mom had her crocs out and Sweet Pea was in LOVE with them!  She kept trying to step into them and then walk.  It was super cute!!!








Papa Bear and his Sweet Pea...oh and I wish I had gotten a photo of Sweet Pea signing "bear" when she would look at Mama Bear or Papa Bear. She even signed "daddy" and then "bear" one time!





And finally, just some random photos

Preschool Transition Update

Apparently I COMPLETELY misinterpreted our meeting yesterday.  I have no idea how I could have been so wrong, but somehow I was.

We walked into the preschool this morning after PT.  It was snack time and so I had her sit at the table and went into the infant/toddler (I/T) room to sign her in.  I was shocked when they said that Sweet Pea would be coming back into the I/T room at 11am.   Considering it was already 9:20, I was shocked!  I went to speak with the director and she said that all the kids transition slowly.  I was able to convince her that because she had speech from 10:30 to 11:30 that she could stay over there until noon.  I was so frustrated that I had misread things so completely that I didn't know what else to say.

After snack we went into the bike yard and Sweet Pea did better than I thought, but she definitely needs some assistance there.  We are going to borrow one of the cars so that we can practice with her and teach her how to climb in and out without pulling the car over.  I think we will be successful if the past is any indication of future performance.  We just have to figure out how to get her out of the car as safely as possible before we can teach her.  Her legs are too short to do it in the normal manner.

After the bike yard the class went back inside for circle time.  Sweet Pea sat down on her little carpet square and I left.  I was too emotional about the situation, but taking a little time to breathe and speak with my husband and my mom allowed me to come up with an idea.

I created an excel file of her schedule matched up with the class schedule.  I then went through and divided the times up to show when Sweet Pea could be in which room.  I set up a 3 week transition schedule that gets her into the preschool room full time by the 31st of May.  It wasn't what I had hoped for, but I thought that this would at least allow me to have a firm understanding of where she was for what portions of the day.  Additionally, it would put a little pressure on the preschool to press forward with more time each week.  It's far from ideal, but it will hopefully allow for the end result to be reached within the month and that is something I can live with.

In speaking with the director today it was clear that her biggest concern is for the safety of Sweet Pea.  I think she is being overprotective and am trying to impress upon her that we are not worried and understand that she will fall down and get hurt.  It's inevitable and we will worry if she doesn't ever get hurt.  All kids do and so if she isn't, then they are babying her too much.  I hope that I can convince them that she will be fine and to teach them that they don't need to hover over her.  Next Tuesday will be our next day to try it.  Wish us luck!

Oh, and the director sent out a letter that we had written introducing Sweet Pea and sharing a little about Down syndrome and how inclusive education is beneficial to all kids, not just special needs.  I've been amazed at the response!  Three children came over to meet her when we first walked in this morning and I've had two parents email me that they are glad Sweet Pea is in the school with their kids.  Another parent shared that when she opened the letter her son was so excited and saying "Sweet Pea swing" and "Sweet Pea eggs" and just so excited to be seeing pictures of her.  Her son doesn't speak much and so it was even more special when he then turned around and saw Sweet Pea with me and exclaimed "Sweet Pea" with such joy. It was so heart warming and just what I needed today.  Sweet Pea has a way of pulling people to her and I know it will serve her well in years to come!

Success at the Preschool Transition Meeting

We had a great meeting this morning!  The meeting included the director, infant/toddler room lead instructor and the teacher of the 2-3 year old classroom in the preschool and myself.  It started off with me sharing a document that I created that introduced Sweet Pea, our dreams for her (get a diploma, etc), what her strengths and weaknesses are and things she loves.

We then talked about the daily contact sheet that I had created:

Meals: All        Some      None       Naps:  Slept Well           Slept Briefly            Relaxed Quietly

My favorite activities today were:

I had a hard time with:

I excelled at:

Comments: 

Sign(s) Needed:

They liked this and wanted to photocopy the page each day so that they too could have a record so that they could look back and see how things were going and what was working the best.

Next we moved into her sign language and the book that I made of her current signs with pictures of Sweet Pea doing them next to pictures of either a flashcard or Daddy doing the same sign (the proper way).  They all loved it and were very happy to be able to have that as a reference.  I talked about my desire for the other kids in her class to learn some basic signs so that they can communicate with Sweet Pea and they were all in favor of that.  I explained that Sweet Pea's receptive language is far more advanced than her expressive, but that she is learning new signs all the time.  We also talked about sharing signs for the current month's theme (May is transportation so I would teach the teacher and Sweet Pea signs for car, bus, train, airplane, etc) so that the teacher can do them as she teaches the lessons.  June will be ocean so I can start working on that one now since Sweet Pea already knows a lot of the transportation signs.

It was around this point that I finally got the courage to ask how they were thinking of making this transition.  This was the worst part of the meeting by a long shot.  The director pulled out a schedule of the daily routine for the classroom and had highlighted the 7-9:30 and 10-10:50 times and explained that these times were when she thought would be the best for Sweet Pea to be in the classroom and that the rest of the time she should be in the infant/toddler room.  I was not happy about this, but I was not sure how to go about getting that changed.  I had two concerns...1) Sweet Pea has PT in the morning until 9 and so the earliest we could get her to preschool is 9:15 so that mean that she would be spending just about an hour a day in the preschool and the other 7 hours in the infant/toddler room.  2) I was afraid that she would have a harder time transitioning by being put back into the infant/toddler room for parts of the day.  I guess there were really three concerns but I wouldn't have mentioned this one...3) I think it gave the school too easy of an "out" and wouldn't push them to push Sweet Pea or the teachers to make this work.

So we talked about her PT and why it had to happen at that hour on those days and so there really wasn't an option to change it.  Then because she was only going to be in the class for 1 hour they knew something needed to change.  I offered to come in for the first 2 weeks to be there with her during the transition if they would do try her all day and they agreed to that, but later in the meeting when I asked what times they were wanting me there they only said a 30 minute period!  It was the time that the kids spend in the bike yard which is quite chaotic so it was understandable.  She isn't steady on her feet and isn't good on any of the bikes or cars yet so they want one on one supervision with her.

A few other things were discussed, but at the end of the meeting it was agreed upon for Sweet Pea to start in the preschool room tomorrow!  I will go for the bike yard time only.  We will meet again in two weeks to see how things are going.  Needless to say I am thrilled with the outcome!  Let's hope that tomorrow (or today by the time I post this) goes smooth!!!!

Here are some of the photos from our sign book:

Cold...love her mouth!


Laugh


Again


Daddy...boy does she love her Daddy!  She was saying and signing Daddy on Tuesday night on our way home from daycare...I think she was excited to be seeing him soon!