After hearing that she would no longer need to see the hematologist because her platelet levels were normal, and the pediatrician would just need to monitor her for the next year, I knew we were also going to get the stamp of excellence from the cardiologist.  We had gotten through our morning appointment unscathed.  Yes!

Waiting room shenanigans

Yesterday was a long day.  It started at 8 am with baby baths, followed by my mom coming to town early to remove a splinter from my oldest daughter's foot (I tried but because I'm too stubborn to buy reading glasses I just couldn't see that splinter).  On Clara's doctor visit days I usually ask my mom to come assist with Lxkas. Plus, I appreciate having an extra set of ears in circumstances where the doctors start tossing medical jargon at me and I can't catch it all by myself.

As was the case during our afternoon appointment when the cardiologist was talking about TR levels.  I stopped her to ask what the acronym was and as soon as it started spilling out of her mouth I shook my head and asked her to carry on.

The gist of her medical speak was that the pressure levels in Clara's right lung are still high.  Because they have been consistently high 3 times now there is a good chance she is developing pulmonary hypertension.

In a few weeks Clara is scheduled to have a heart catheterization, in which they will insert a catheter through a leg vein and run it to her heart.  Once in place, the doctor will get pressure readings and be able to make a determination as to what is causing the blood pressure in her lung to be high. It could be too much blood swishing around in her chamber, which would be the best news, or it could be the start of pulmonary hypertension, which would be okay news because at that stage it would still be reversible.  Worse case scenario would be she has developed a later stage of pulmonary hypertension which can be somewhat managed with medications and lifestyle changes, but leads to a shortened lifespan.  The cardiologist's hunch is the beginning stage.

 If the doctor can, he will patch the hole in her heart with an umbrella type patch since the catheter will already be in place.  This would require an overnight stay.  If he can't make the patch work, which I would guess might be due to her size and age (?) then the doctors will want to schedule open heart surgery to close her ASD and end the blood pressure problem so that she doesn't develop more serious issues.

I'm all for closing the ASD, but the thought of Clara being put under with anesthesia is haunting me.  She's 13 pounds, for goodness sake!  And she's... my baby.  But, we don't have a choice, and I am thankful that a medical team has found and been monitoring this issue so that my sweet girl will be healed.  

Clara's provider was here today and I'm glad because I needed to talk to someone who understands.  She has become my sounding board and adviser.  She gave me some pointers to bring up with the doctor during our pre-admission meeting and she let me know she was here for me.  It means a lot to me.  And I know she's scared with me.  She lost her son who also had Down syndrome when he was 10 due to a reaction to Demerol.   I don't know how she holds herself together so well when she sees other families going through this.  She is a strong woman.

She also made Clara some leg bands to keep her legs from flailing every way outward they can.  They limit her limberty (yes, I made that up.  Her liberty to be limber) so she can develop her muscles the proper way.  

I'm still digesting yesterday.  I feel like I need a big scream from a high mountain.  However, there are no mountains in Oklahoma.  I just know there is build-up inside me that continues to amass and somehow it will find a way out prior to the morning of her heart cath.  

leg band

Clara turned 6 months old on the 8th of this month.  I wanted to write an update that day, and then when the day got away from me I thought I would write it the following day.  Now it's two weeks later.  Where are my priorities?

Well, now the little miss is 6 and a half months old.  I don't have any shocking revelations, but since she is at her half year mark I feel I should say something.  A toast, perhaps?

She had her six month check-up with the regular pediatrician on her half birthday.  He was happy to see her looking so healthy and putting on weight, though she is still just at the 5th percentile in growth for babies her age.  I think to make me feel better, though I didn't feel bad, the doctor printed a Down syndrome growth chart (finally) that he will also use to track her growth.  On that chart she makes it to the 50% mark, meaning her size and weight are pretty average for a baby with Down syndrome.

He also noted that developmentally she is on par with babies who are four months old.  When I told Clara's provider (state provided therapist), she remarked that she thought Clara was more like five months.  I'll take either because it doesn't really matter to me.  And being that it seemed Clara slept the first three months of her life away, I think she's doing great.

Clara holds her head well now.  She has great control.  On her tummy she lifts her upper body with her arms to have a look around.  I don't know why, but I didn't feel like we were ever going to get to this point.  But, I also wasn't as aggressive as I'm sure her provider would have liked for me to be, for no other reason than that Clara hated tummy time.  Now, she can intentionally roll over (she's been rolling over for a while without realizing it) and seems to like tummy time a lot more because she chooses to do it, not because Mommy tries to make her do it.  Because of the control she has gained I also give her a lot more floor time with her toys, which she seems to enjoy.  She is also handling her toys in her hands with more intent, and bringing them to her mouth to chew.  I have watched Clara work to get to this point.  It's like she always knew she could do it, but she just couldn't get her muscles to cooperate with her.  I think her mind is further developed than the rest of her body will allow her to be.

Her favorite toys are still her footsies.  She brings them up and handles them and chews on them, and coos contently all the while.  I like her footsie time because it's her time to herself--like, Mommy doesn't have to hold her time.

She's also made gains socially.  At her visit the doctor asked me if she was only making vowel sounds or if she was starting to sound consonants, too.  I hadn't even thought about this as being a marker for development.  And I realized that she doesn't sound consonants, but only vowels.  However, she does yell at me to get a reaction.  It's the cutest darn thing.  It started accidentally a couple of weeks back.  She made a darling squeal sound, and I acted surprised and jumped a little.  She made the squeal again to see if I would react the same, and I did.  And so now, often when I hold her in my lap facing me we play her game.  I love it, and I think she knows it because she will smile between the squeals.

She has started actually laughing, too.  Her laughs are usually a coughing sound and I don't know why this is, but it is.  A few days ago I found out she was ticklish under her arms and for the first time real laughs came from within her.

And at the suggestion of her provider Clara now has a bumbo seat.  She sits great in it, and because of this she started eating solids this past week.  The doctor had said there was no rush because of her development being at four months, but I think we were ready.  Clara loves peas and sweet potatoes; green beans and squash not so much.

I'm also giving her the bottle more than the breast now.  I haven't set a date, but sometime in the near future I will completely ween her, which makes me sad.   As with Lxkas, I'm sure it will hurt me more than it does her.  I see an "ode to breastfeeding" entry coming up soon.

Next week we have a couple of doctors to visit who we haven't seen in a while.  She will visit the hematologist to check her platelet levels, which until May had been low, but then in May they were too high, which the doctor explained was probably just them overcompensating after having been low.  I'm not sure which hematologist we will see since Clara's regular hematologist took a job at St. Jude's Children's Hospital, which is a bummer because she was the sweetest doctor we've had.  But, I have to be happy for her that she gets to go to a renowned hospital because she is that good.

The same day as the hematologist we will see my favorite doctor (not), the cardiologist.  Last time we saw her she scared me with the whole pulmonary hypertension thing.  I think I wrote about that.  Clara appears to be so healthy that if she tries to scare me this time with some crap I don't understand I might have to give her a piece of my mind.

And lastly, some happy news.  The family, and I mean grandmothers, grandpa, aunts, siblings, myself and Cxdy, will be participating in the 2013 Buddy Walk to raise money for the National Down Syndrome Association as well as our local chapter.  I'm really excited to be taking part in this.  I plan to design t-shirts for our team and we are thinking after the walk we will have a cookout for everyone who participates on Clara's behalf.  I hope we have good participation and this can become an annual event for everyone who gets involved.

So, there is the rundown on my little big girl. I can't believe we are half way to a year.  It goes by so fast, yet it seems like she's always been part of the family.  I know.  It makes no sense.  But what does make sense is that the love that I have for her is immeasurable and I'm so glad she found her way into our lives.  I was telling her grandmother the other day that when I was pregnant and crying myself to sleep after finding out she had Ds, if only I could have seen 6 months into the future I would have been smiling myself to sleep instead.  Silly Mommy!

Anyway, cheers to my Clara, a most amazing and curious little creature.

 

 

Mornings have become a ritualistic part of the day for me.  Because we live in a 3 bedroom home both babies bunk with Cxdy and I.  Lxkas has a toddler bed and Clara sleeps in her crib.  However, some time during the night, one or both of them usually ends up sleeping with us.  Clara is starting to sleep through the night, but occasionally she'll still want an early morning feeding.  Lxkas sometimes wakes up scared and makes his way up the bed on his daddy's side, cruising over daddy in four wheel drive and settling himself in between us.  If they are crowding us (I can't believe I said "if"), once they have fallen back asleep usually one of us manages to hold our eyes open and move our bodies upright long enough to put them back in their own beds.  And then, on weekdays, Cxdy drags himself out of bed at about 6:15 am to prepare himself for work.  Half an hour later, he is gone.  Usually Clara will wake again for a feeding shortly after, so she comes back to bed with me.  We cuddle in the center.  A short time later, perhaps hearing our stirs, Lxkas comes climbing in to join us.  Sometimes he falls back asleep; sometimes he becomes active enough to convince us it's time to get up.

This might annoy most people who need that peaceful nights sleep without interruption, but I have become accustomed to it, and honestly, I just really don't mind.  I don't even mind sharing our room--for now--especially on mornings like this morning.

This morning, I had Clara on my left and she and I were facing each other.  Lxkas crawled into bed as usual and granted me a wish by falling back to sleep, his front side to my back side.  So, I had two babies wedged pretty tightly into me and it was the most comforting feeling I think I've ever experienced in 41 years.  His body was soft and warm against me, like a down pillow fresh out of the dryer; and even though I couldn't move an 1/8 of an inch I found myself smiling.  I don't know how he did it, but he had found the perfect position.  When Clara finished nursing she looked up at my face softly cooing and grinning like a shy child meeting a friend for the first time.  Love cannot describe how much I enjoy her smiles, but especially the ones she was blessing me with this morning.

It was a pleasant morning and it made getting out of bed all the more pleasant.  I wiggled free of the babies, kissed and tickled Lxkas until he was smiling and waking, then went about getting dressed for the day.

We all got our smiles in this morning.  I must say, I'm a lucky old momma.

Clara contently wiggling around in her bed while I ready myself for the day.