Saturday, February 27, 2010

Great post to share

I loved this post and thought I would pass it on for others to enjoy.  I need to start looking at Sweet Pea from the second daughter perspective!  Brennan's Beginnings

Friday, February 26, 2010

Combat Crawling?!?!?

Ok guys, this is getting ridiculous...10 months has now officially become huge for us!  Sweet Pea spent a great deal of the day cooped up in a doctors office (minor scare at a routine pre-op appointment when her O2 saturation levels were anywhere from 88 - 94...more on that in a second) and apparently that pissed her off enough to bust out a new skill...combat crawling (crawling using the arms and dragging the rest of the body along)!  And Daddy & I missed it!  Luckily Grandma saw it!  Sweet Pea spent the afternoon at Grandma's since the fever keeps coming back and so she can't go to daycare.  Her Infant Stimulation therapist was there playing with her and one of the cats was sitting near by.  She was laying on her tummy and crept forward to reach the cat.  (Long hair cat = great pulling toy).  They didn't really think much of it but then she did it a few more times.  Then once the therapist left my mom called me to tell me that she was combat crawling and she did it even more while she was on the phone with me.  I knew that she wouldn't perform for her daddy and I when we got her home and sure enough...she just laid there tonight.  Hopefully this weekend we can see it ourselves and even get some confirmation video for all of you guys!  This would be so wonderful if she combat crawls before her 11th month birthday!!!!



So back to our scare of the day...the O2 sats...94 is borderline where they would typically want to put the child on oxygen.  The nurse was even saying how she really might want to make her check into the hospital if her O2 sats really stay that low.  Luckily her coloring was really good and so it seemed clear that she wasn't in real trouble.  It is disturbing that the numbers were coming in so low, but 2 hours later they redid the test and the sats was up to 97 or 98.  They were much happier with that result so we don't know if it was just the original machine or if her sats are fluctuating that much.  We can hope it's the first.  Her lungs sounded clear and so the RSV (a contagious respiratory virus) that the nurse also feared wasn't a true worry either.  Yeah, that nurse really wasn't good for my nerves, but at least it ended ok.  We were allowed to leave, but they want us to check in with our pediatrician next week if her cold doesn't kick.

That's about it for today.  I hope tomorrow brings us a witnessing of the combat crawling!!!!

Emotions at 11 months

Just found this blog wasn't ever published...so here it goes...

I really did intend this blog to be a therapeutic tool for me in addition to a way to share the news of Sweet Pea's life with many friends and family.  However, all I seem to do is share the good news on her milestones or the facts on doctor appointments.  People have asked me if this is because now I know people are reading it and I don't want to share my feelings with everyone?  I have to honestly say that isn't the case.  Let me explain...

I think it is two fold:
One, I don't get much "free" time anymore since Daddy has been working and I'm working a ton on top of having to make up for hours that I can't work do to various doctor appointments.  That doesn't leave much time for writing blog posts.

Two, as I've mentioned before, this blog has allowed me to focus more on the positive things that Sweet Pea is doing instead of getting dragged down so far into the day to day tasks and therapies and just the life that we live.  I like looking for things to share, be it taking more pictures to hopefully capture something adorable or playing with her and noticing a new development.  I think I probably would have noticed many of the developments without this blog, but the blog gives me the chance to really celebrate them outside of just our immediate family.  It makes a bigger deal out of all of them as we get to share them with all of you.  And it helps many of you feel more in the loop as to what Sweet Pea is up to at any given time.  It's a win win for us all.

So yes, I haven't written much about my emotional state recently and hopefully that will change here soon.  I will try to write something for the 11 month birthday (which she doesn't actually get this month since the month only has 28 days) so that I have a benchmark to look back on and see how far I've come.  My friends and family have been amazing and so supportive and I'm thankful to them for the good cries that they have allowed me to partake in.  Overall though I'd say that I'm doing ok. 

Thursday, February 25, 2010

Two firsts in one day!

Someone had mentioned to me once that their child had huge growth (mental, not physical) in their 10th month and so I had high hopes, but really was trying not to expect anything.  Well, Sweet Pea has certainly not disappointed.

So Sweet Pea has been sick...fever of 102, running nose, coughing, gunk in the eyes, just not herself sick...but we decide to go to OT on Wednesday because she didn't have a fever and seemed to be in good spirits.  This is the OT session that is focused on oral motor and feeding so it is pretty "easy" on her and she enjoys it normally so I wasn't being a mean mommy by having her go.  She did great in the session and so I'm glad we went!  In the middle of the session her OT was teaching her how to "give 5" by having Sweet Pea slap her hand and then we would both clap.  Without trying to teach Sweet Pea the clapping part she started to do it!  She was so darn adorable!  Every time we would clap she would join in and get a big smile.  It melted my heart!  The "give 5" part is still very much a work in progress, but the clapping is now one of her favorite motions.  Eventually there will be sound, but until then...



As if that weren't enough...Grandma has been babysitting since Sweet Pea can't go to daycare.  When I picked her up on Wednesday Grandma made the casual comment about how she loves that Sweet Pea now lifts her arms when you go to pick her up.  I said huh?  She does what?  Grandma bent down to pick her up and sure enough, up go her arms.  Well, up may not be a good description, but they do go up to just below shoulder level.  I don't know when she started doing that!  When Daddy got home that night I asked him if he knew that she was doing that and he hadn't noticed it either!  She did it for him though immediately too!  Maybe she just picked it up on Wednesday...or maybe her parents are really unobservant...either way, she does it!  Yippee!

Note: For those of you that don't know..."Does she raise her arms when you go to pick her up" is a question that therapists/doctors often ask when determining how she is developing.  I've had to say no to that for months and it broke my heart every time because it seemed like such a simple motion when all the typical kids around did it.  At last!

Thanks for reading about her accomplishments!  I am a proud mommy tonight and I just hope my little girl feels better soon!  She is definitely getting better, but still has a slight fever so we will just continue to watch it.

Monday, February 22, 2010

Inspiring Video

This is long (20+ minutes) but I found it very inspirational...

Surgery Postponed a Week

I realized that I didn't post when Sweet Pea's surgery was scheduled for...it was going to be Wednesday, March 3rd...both the ear tubes and the EGD were to happen at the same time.  I got a call this morning from the hospital telling me that they had to reschedule because the GI doctor wasn't going to be available for the 3rd after all.  We are now scheduled for Wednesday, March 10th.  It is frustrating, but since she has a cold right now, it gives us an extra week to get her healthy.  Of course, it also gives her another week to get her another cold, but let's hope that doesn't happen.

This delay also means that we won't be able to attend her Great Grandma's 90th b-day party in Florida that following weekend.  We will miss you Birthday Girl, but we will make a trip out to see you soon.

Saturday, February 20, 2010

Weekend Update

This week has been a pretty slow week in the world of Sweet Pea, but her mommy and daddy have been keeping all too busy.  It's a shock having both of us working again!  Don't get me wrong, I am very happy, but it is definitely more complicated and there certainly aren't enough hours in the days.  We do the best we can and we thank Grandma for helping out so much!

Here is a video of Sweet Pea babbling...she doesn't have an indoor voice at all!  There are some times that she sounds like Donald Duck...or maybe Daffy Duck?  We are hoping that the ear tubes will only help with progressing her speech skills.



Here is a video of Sweet Pea showing off that she can now eat puffs...little pieces of food that dissolve faster than cheerios would in case she tries to swallow them whole.  I'll be honest...this was by far the best she has ever done it and it was our first and only attempt at catching it on video so I'm glad it worked out so well.  She does enjoy these and we give them to her after dinner while we are still trying to finish our meals.  It helps her work on her fine motor skills and keep her occupied so mommy and daddy can actually get a little food in themselves too.  Oh, and maybe it will allow us time to practice that thing the doctors call chewing...(see last post) since we don't do a ton of that here.



Mommy went to a meeting of our local DS support group and heard a lawyer speak that is a client rights advocate at one of the local Regional Centers (they provide all our early intervention services).  It was good information that hopefully we will never need to utilize on what to do if we need to appeal a decision about Sweet Pea's services.  Basically, if she is ever denied services that we believe she needs, this might be what we have to do to fight for her.  We have had great luck with our Regional Center so far (knock on wood) and we hope that it doesn't change, but it is good to be prepared just in case.  It's also nice to see some of the other parents as they have been an unbelievable source of strength for us.

Mommy was also lucky enough to go out with a really good friend and have a great talk.  Even though we live close together, we don't get the chance to get together very often.  I've missed her and it was wonderful to spend a few hours with her.

This morning we took Sweet Pea to see an optometrist who specializes in vision therapy.  I'll try to write more about what we have learned about this type of therapy in another post soon.  The doctor is going to mail us some information on things we can do with Sweet Pea now to help her dancing and lazy eyes.  Eventually we will probably start doing regular therapy with him, but for now we will just see him every 6 months and do some things at home to help while she is still really young.  He mentioned that crawling is so good for her and to not force walking earlier than necessary.  We had already heard about the benefits of crawling from many different therapists for how many muscles it involves, but his point was slightly different in that it helps integrate the two sides of the brain because you are using both sides of the body in coordination.  That solidifies my decision to have a conversation with our PT on Tuesday to stop having her focus on the standing (which Sweet Pea DETESTS) and start working on the crawling.  It's been something that I've been having an internal argument about and this last reason makes me finally decide to speak up.  Sweet Pea is already starting to get the idea of crawling, but she could definitely use some assistance in getting the right form.  Currently she is just digging her toes into the ground and stiffening her legs and lurching forward a small amount.  It's good that she gets the concept, but we need to get her bending her legs.

This afternoon Sweet Pea and I attended a baby shower with Auntie, Cousins and Grandma and we finally got a picture of the 3 grandkids together.  Not the best, but it is certainly better than the others we took!  Trying to get a baby and 2 very active boys to look at the camera at the same time with a smile was never going to happen.  Sweet Pea and I love these boys and they definitely love her.


Sweet Pea did tackle another milestone...she is banging things together!  Here is a video taken tonight of her banging two blocks together.  OT & Infant Stimulation have been working on this for a while, but she has gotten it.  We are so happy for her and I do believe that she is quite impressed with herself too!

Friday, February 19, 2010

Good News from the Cardiologist!

Quick update before I get back to work for they day:

We met with Sweet Pea's cardiologist today to discuss the findings of the MRI we had done last month.  He confirmed the aberrant right subclavian artery and explained that instead of coming out of the top of the heart it comes out of the bottom and wraps around.  I understand that this is the artery that feeds the right arm.  He doesn't believe that it is causing any issues other than the indent in the esophagus...nothing with the trachea, blood flow, etc.  The indent in the esophagus may pose a problem when she starts eating more solid foods, but it may not even then.  We may have to take extra caution to make sure she chews her food well (she can't learn that from her mom or dad), but we should be able to avoid any type of surgery related to this.  Just for the sake of knowledge sharing, if surgery was necessary they would try to disconnect the artery and reattach it where it should be or just disconnect it completely and somehow let the blood get to the right arm some other way.  We didn't ask many questions because we don't think it will ever come to that and if it does, then we will ask all sorts of questions at that time.

The cardiologist released us completely!  He doesn't want us to come back in 6 months or even a year.  We can always go back to him if we need to, but he thinks she should be good to go!!!!  We get to check one doctor off our list of regular appointments!

Thank you everyone for your positive thoughts as they appear to have worked their magic.  One issue down and now we can focus on the other much less severe ones...reflux, ear infections/fluid, oral motor, etc. 

Have a great Friday afternoon and I plan to write more and share some pictures and videos this weekend when I am not supposed to be working.

Love you all!!!!

Thursday, February 11, 2010

Update from our appointments

Today was a long day and I'm so glad that my mom was there with me to help me get through it.  Sitting in waiting rooms and exam rooms from 8:30 until 1pm!  Sweet Pea was a trooper through it all and was quite adorable at times. 


I'm hoping this video works...my first time doing this so let me know how it goes...



On to the serious stuff...here is the rundown...we met with the GI first, but you will see why I've switched them around here...

ENT: Still has fluid in both ears and so ear tubes are going to happen.  The doc is a bit concerned about getting the tubes in where they need to be.  The way I understand it is the DS made her ears smaller and the drum is at a slight angle so it makes it hard (if not impossible) to get the tubes in the perfect spot.  This means that there is a fair chance that the tubes will have to be put back in every 3-4 months.  We hope that isn't the case, but won't know until we try it.  We are scheduling the surgery and hope to have it happen in the next 2-3 weeks, but things haven't moved that quickly at this hospital in the past so I'm not holding my breath. 

GI: Need to have more tests run.  Reflux isn't under control...duh...but could be caused by slow emptying of the stomach.  They were going to do a gastric emptying scan (also called a reflux scan) where she drinks some radioactive liquid and they take pictures of her every minute for an hour.  The hope is that 40% of the drink empties from the stomach by the end of that hour.  The ENT asked if the GI wanted to do an EGD while she was sedated.  So, we went back to the GI after the ENT and left a message asking what he wanted to do.  I received a call an hour later saying that doing the EGD instead of the emptying scan was a good idea.  He doesn't normally suggest the EGD first because of the sedation required, but if she is already being sedated, he thinks it is a good thing to do.

We will be proceeding with both just as soon as they can get them scheduled.  It's good that we get to kill two birds with one stone, but boy did I wish we didn't have to do either.

That brings us to the final bit of news for the day...the GI did read to us a portion of the MRI results...the indentation is being caused by an aberrant right subclavian artery.  He didn't want to give us the actual report, but he did read us a portion and now we just have to wait a week until we meet with the cardiologist.  It's good that they found something, but it's also bad that they found something.  We are hoping that it is something that they can just keep an eye on, but we will know more next Friday.

Let's end on a high note...To reward her for being so good all day I took her to the park around the corner from the house and she played on the new swings.  If you remember a couple of weeks ago I mentioned that they had redone the park by our house and installed a swing set.  I was disappointed that they didn't put any baby swings in, but I figured I could just swing with her on the regular swings.  Well, they put in a baby swing now!  There are 2 regular swings, 1 baby and 1 toddler.  It's great!  Sweet Pea had a blast and we will be going there a lot now.  I'm so excited!  The simple things...we definitely need to enjoy the simple things...I just keep trying to remind myself of that!

Wednesday, February 10, 2010

Wordless Wednesday: Everyone eats in the bath right?

She Waved Hi!

We've been waving her hand hi and bye when people come and go for a few weeks now and it seems like she has gotten the idea.  When I took her to daycare we stopped for a minute at the Director's window and said hi and I waved Sweet Pea's hand and then I was there for a few more seconds because the Director was talking to Sweet Pea and Sweet Pea waved to the director again all on her own!  It was so cute!!!!  I hope to get her to repeat the wave again soon, but I'll enjoy that she did it once until then.

We have also been working on turn taking.  I've read over and over again how important turn taking is for communication and we have been mimicking and trying to get Sweet Pea to take her turn for many months now.  On Monday evening we were playing with a new toy (thanks to the cousins for passing on another great toy) that requires the top to be pushed for it to spin and have balls spin around inside it.  I would push the top and she would watch it and then I would tell her it's her turn and take her hand and help her press it.  When it would stop again I would say it's my turn and push it.  After doing this for many turns she surprised me!  I know...I'm constantly surprised, but they are typically good surprises!  Anyway, when I would say it was her turn she started to reach over and grab my hand and put it on top of the toy to push it.  I didn't believe it at first, but every time it was her turn she would do it again.  I loved it!  Very exciting to see her starting to understand what I'm saying and what taking a turn means.

Tomorrow we are off to the GI & ENT so think good thoughts!  We will hopefully hear something about the MRI, but I'm not holding my breath on that one since the Cardiologist is the one that ordered the MRI so the others may not tell me anything.  We will probably decide if ear tubes are needed at the ENT and might find out what is next in the world of understanding/controlling her reflux at the GI.

Sunday, February 7, 2010

So Proud!

I'm sure that this streak won't continue, but I am so darn proud of the great strides that Sweet Pea has been making the past few weeks.  Each week there seems to be something new for me to celebrate!  This weekend has been no exception as we get to celebrate two accomplishments...

1) Actual babbling!  Sweet Pea is finally starting to do more than just throaty sounds and is actually stringing together a few baah baah baah.  Most of the time it isn't a b sound, but just her making these kinds of sounds is new even without the actual b sound.  This is something that her typical peers have been doing for a long time and it's been hard for me to watch them do it and just wait for Sweet Pea to start doing something.  I'm very glad that she is finally starting this phase of communicating and I know that we have a very long road ahead of us in the realm of speech, but she has to start with something.

2) Holding objects in both hands!  For quite some time now Sweet Pea would be holding an object and passing it back and forth in her hands, but if you tried to hand her something else, she would grab the new toy and instantly drop the original toy.  Today Uncle B (who is actually her cousin's uncle) was playing with her and she had a rubber ducky in one hand and he handed her another rubber ducky and she held onto them both!  I was so excited and poor Uncle B probably thinks I'm insane, but we have been watching for this for some time now.  Our OT will be excited to hear about this tomorrow as well.  She repeated it a number of times throughout the afternoon so we know it wasn't a fluke too!

We all had a good time at Cousin C's 3rd birthday party and it's amazing to watch how fast he and his brother are growing up.  It's hard to watch how "perfect" they are, but at the same time I am so happy for them and all that those boys are able to accomplish.  They are great boys!  They are so wonderful to Sweet Pea and I know that she has their love and support forever and that means more to me than words can say.

I think that's enough bragging for one mommy and aunt for the day.  Love you all!

Friday, February 5, 2010

TGIF

It's been a hard week and I'm thrilled it's the weekend!  I'm looking forward to spending some quality time with Sweet Pea and Daddy.

Wednesday we had a good OT session.  This is the session that focuses on feeding and oral motor and Sweet Pea enjoys it quite a bit.  This blog is a great excuse to get me to actually take pictures of more things that we do here weekly!  The first picture is of her enjoying the toothette (basically a pink foam lollipop) work, the middle is her sucking in her bottom lip which is a new trick that Daddy and I love for some reason...she does the top lip sometimes too and we figure it is a good thing for her to experiment with all her mouth muscles...and the third picture is of the z-vibe that is a vibrating little tool that she is supposed to bite on.  She loves vibration and is often too fascinated with the vibration to bother biting, but we are working on that.




Thursday brought our other OT session and Sweet Pea really was fussy for most of it, but at the end we did get her to show off some of her new skills.  She is propping on one hand while reaching to the side.  The toy is quite annoying (singing Wiggles guitar) but she seems to enjoy it and that is all that matters.   During this session Sweet Pea was cracking us up because she would be in the middle of crying, then stop and turn to look at Grandma, who was watching the session, and look at her like why aren't you rescuing me?  It was quite cute!


Tonight we were having fun playing with Sweet Pea on the floor.  She actually moved a tiny bit forward instead of backward, but I think it was purely an accident.  She was reaching for her favorite musical star so she was very motivated.  We can hope to replicate it, but I'm not getting my hopes up.  Anyway, she then cracked me up by starting to take apart the foam floor mat.

Right before we sat down for dinner Sweet Pea gave us this last photo.  She was climbing all over the mat and didn't matter what was in her way.  It was the first time we saw her really working to get over and around things that were in her way.  Well, she wasn't too happy when she got into this predicament and she really wasn't happy that Mommy was taking her picture instead of helping her get out from under the futon, but I just couldn't resist!

I want to send a big thank you to my mom (Grandma) for all her help this week!  She was a life saver and I don't know what we would be doing without her!  Thanks Mom!

Monday, February 1, 2010

Come on February...be a good one!

Sweet Pea ended January with the arrival of her 2nd tooth. It broke through sometime yesterday evening and I think Grandma had to deal with a fussy little girl partially because of that. Hopefully now that it has broken through she will be a happier little girl as she certainly hasn't been her typical happy self recently.

This weekend we had a lot of fun. Sweet Pea and I met up with some mommy friends on Saturday afternoon and we had a good play date and therapy session all in one. These gals are wonderful and I am so lucky to have so many wonderful friends in my life! It was wonderful and at the same time very hard to watch the other children (2 were within a week of Sweet Pea's age and the other was a little younger) crawling all around and showing off their standing and walking abilities. It's just something that I have to get used to and somehow learn to not think about it in a negative way. Sweet Pea will learn to do everything that they are doing right now, it will just take her longer and it will take more work on our part to help her get there. She and we can do it though! One of the mommies was snuggling with Sweet Pea and commenting on how she missed the days when she could snuggle with her little one. I need to enjoy my snuggles and cherish them as they too will probably disappear as she becomes more mobile and wanting to get into everything all the time.

Sunday we were lucky enough to have Grandma offer to watch Sweet Pea for a while in the afternoon. We have learned that we need to get Sweet Pea out of the house more as she isn't very comfortable going to places that she isn't used to. Poor Grandma got to deal with that on top of the teething and gassy issues! We love you Grandma!!!! Daddy and I have made a promise to ourselves and Sweet Pea that we will get her out of our house and daycare and take her places to help her become more accepting to new environments. This one is mainly our own fault so we owe it to Sweet Pea to help her try to solve it. Parks and relatives houses will be in our future a lot! Watch out world!

Along the same lines...I remember not too many months ago when I was saddened by the fact that Sweet Pea didn't seem to care if I was there or not. Anyone would do. It was at the time when I was still trying to bond with her and I just wasn't feeling like she wanted to bond at all with me. Well, I am certainly not just anyone anymore! Sweet Pea definitely loves her mommy (and her daddy) now! Most of the time I love it, even if it is a little frustrating. It shows how far she has come.

Final news...Sweet Pea started putting weight on her legs!!!! I think I've mentioned before that she always learns something new when we have a play date with typical kids. Well, she did this one for the first time at the Saturday play date so her streak continues. Her legs used to buckle immediately upon unlocking her knees and now she is able to lean against my legs and stand on her own legs for 5-10 seconds while I hold her feet with my feet. We are so excited for her! I don't want to push the walking thing because crawling is the best thing for developing her muscles (crawling uses many more muscles than walking), but it is nice for her to start to put a little weight on those chunky legs.

Here's hoping February is a good month for us!  Medically, we will get the results of the MRI and make final determinations on ear tubes, but that is about all that is planned for the month.  That leaves lots of time for playing, hugs and kisses and laughter!


Sweet Pea sends big smooches to all!
 
Our little bookworm