E stripes spaceship chair

My little Emily Rose turned 6 months old last week!  And what a 6 months it’s been!  So many ups and downs,  highs and lows….sigh.  Overall, though, I couldn’t be more pleased with how my little mama is doing.

Eating: Eating is an ongoing issue for Emily.  Every feeding is different and there is often no rhyme or reason to it (unless her last feeding was a larger one or if she is not feeling well).  We feed her every 3 hours for approximately 30-45 minutes per feeding.  She has typically has 7 feedings a day, although sometimes she will have as few as 6 or as many as 8.  We stopped the 2 a.m. feeding shortly before I returned to work, thank goodness.  We concentrate her formula so she gets more nutrients and calories per feeding.  Luckily, she tolerates feeding well insofar as the fact that she does not get sick during or afterward, i.e. spit up/throw up.  Occasionally she will refuse a feeding entirely, but fortunately, this is rare.  At times she will not be in the mood to eat for whatever reason and she will only take 10-20 mL, but fortunately this is rare, as well.  A poorer feeding consists of about an ounce and a half (or less).  A decent feeding is about 2 ounces.  A good feeding for her is about 3 ounces.  We also have to get creative sometimes in order to get her to feed, such as carrying her around the house while we feed her, bringing her near the TV or a light source, feeding her in her bassinet or carseat as opposed to in our laps, etc.  We do whatever we have to do to try to get her to eat.  We are getting a lot better about not being so upset by her poorer feedings as long as they are not occurring frequently or happening back-to-back, as they are an inevitable part of her condition.  It also doesn’t seem to be affecting her weight or growth, as she continues to gain at a slow but steady rate.

Physical Development: Emily was 4 pounds 8 ounces and 17 inches long at birth.  At 6 months old she now weighs approximately 10 pounds and is somewhere between 22 & 23 inches long.  She has been able to roll over from front to back since she was only 10 weeks old.  She can now roll from front to back in both directions, i.e. to the left and to the right.  She can also roll 3/4 of the way over from back to front, but she has not yet been able to roll over all the way over in that direction.  She has been doing that since she was about 4 months old.  She cannot sit up yet but we prop her up on things periodically, put her in a Boppy or a Bumbo (carefully supervised), etc., to try to pique her interest and help her along.  She has been smiling, laughing (more like squealing), and “talking” (vocalizing) for months now.  She will bat at hanging toys as long as they’re in front of her, such as on a bouncer, carseat, playyard, etc.   She does not seem to reach for things yet but she will grab things that come near her hands.  She also likes to grab our hands/fingers, skin, clothing, etc.  She actually pinched my arm so hard the other day that it hurt!  My little toughie.  She has also been experimenting with her bottle lately – knocking it out of my hand, grabbing it, trying to hold it herself, etc.  She never ceases to amaze me.

E bottle 3

E bottle 2

Early Intervention and OPWDD: Emily receives Feeding/Speech twice a week, ED twice a week, and PT twice a week.  I am not sure whether or not these services are helping her, as I have little to no basis for comparison – I am in the mental health field so I sought out these services for her ASAP, so she’s been receiving them since she was about 2 months old.  However, who knows how she would be doing without them.  I’d like to think that they’re helping her.  I also applied for and received approval for services for Emily through OPWDD.  She does not yet need their services, but it is possible that someday she will.  I am not sure if all states have this, but I would encourage everyone who can to apply, as they provide numerous free services for our children if/when they need them (adaptive equipment, home modifications [ramps, etc.], in-home services, services in the community such as residential placement and day programs, and so on).

Health: Emily’s overall health is good.  She has a Pediatrician, a Geneticist, a Neurologist, a Cardiologist, a Gastroenterologist, an Ophthalmologist, an ENT, and so on.  Managing her many appointments can be difficult at times.  She has had multiple colds since starting daycare, but they have been manageable without antibiotics.  We just use a bulb syringe to suction out her nose and administer Tylenol when necessary.  She has had one episode of what seemed to be seizure activity, but it preceded one of the aforementioned illnesses – which included a fever – so we are hoping it was just triggered by that.  She has since had an EEG which was normal.  We have opted not to medicate her for seizures unless/until her seizure activity becomes more frequent.  She has a mild/moderate heart defect which her cardiologist was not concerned about and which will continue to be monitored.  Her next appointment is next week.  Wish us luck.  She has an astigmatism in both eyes, is farsighted, and has some tracking difficulties (she tracks faces very well, but not so much objects), but her ophthalmologist believes these issues may resolve themselves over time.  We had quite a health scare fairly recently, as we had to have her tested for Cystic Fibrosis due to a mutation that showed up in her newborn genetic screening.  We had known since shortly after her birth that we needed to follow up on this, but in order to do so she needed to take a Sweat Test and she wouldn’t produce enough sweat to be tested until she weighed about 10 pounds.  We were therefore only able to do that recently and waiting for the results was just agonizing.  The idea of her having a serious medical condition on top of WHS was more than I could bear, as her lifespan would be in serious jeopardy.  Thankfully, she does not have it.  I still periodically send thanks out to the universe for that.  Her feeding is still up and down, but it is primarily fair to good, so we have opted not to pursue a feeding tube for the time being.  We still think about it every so often, especially when she goes through a bout of poor feedings, but her doctors are mixed on the idea (some think it’s a good idea, some don’t) and we feel that it can and should wait unless/until her weight plateaus or she starts consistently losing.  She seems to be doing just fine on her own, so we are in no rush to subject her to a serious and potentially traumatic surgery unless it’s absolutely necessary.  The way her little body is made up is also amusing to me – she’s such a little string bean except for her thighs.  She’s actually got chunky thighs.  Such wonderful genetic gifts she’s inherited from her Mommy, haha.

Social/Personality: Emily is a good, sweet, delightful child.  She rarely cries (only when hungry, trying to poop, has a dirty diaper, or not feeling well).  She smiles on a regular basis.  She just loves people – adults, other children, social interaction of any kind, etc.  She especially loves her 2 year-old brother.  The way she responds to him, lights up whenever he comes near her, etc., is a sight to see and would melt anyone’s heart.  Her cooing and “talking” is such a joy.

W & E

So that is our little Emily.  We love her more and more with each passing moment.  It is hard for me at times when her developmental lags are more apparent (when I see younger or same-age classmates doing things that she can’t, etc.), but I have to remind myself that she is her own person with her own circumstances and that she will do things in her own time when she is able.  Emily does not know that she has WHS, how old she is, what she “should” be doing, and so on.  She just does what she can when she can.  I therefore need to let her be free to be herself, whatever that entails.  We cannot wait to see the changes, developments, accomplishments, milestones, that even more time on this earth will bring.

Below is the best picture to date that I’ve ever taken of my beautiful love.

E in white and pink stripes

<3  <3  <3


7 Responses to Emily Rose at 6 months

  1. Charlie says:

    I just started reading most everyone’s stories too. Emily reminds me of Charlotte. We too got the CF result after the newborn screening. I have not had the nerve to do the sweat test, but reading your results were negative made me feel better.

    My girl loves her siblings so much too and they really get her excited. I am not sure where your family lives, but it would be fun to meet Emily!

  2. Kristen Faccioli Licari says:

    I understand your hesitation, but I would encourage you to get the test, as there are now numerous treatments available to help prolong the lives of afflicted individuals. If it’s any consolation, you would probably suspect that something was going on if she did have it – her skin would taste unusually salty and she would get sick more frequently with significant chest congestion. We are in downstate New York, about 15 miles outside of NYC.

  3. jjenkins says:

    She sounds, and looks, like she is doing so good! I love that hair on her head. Poor Caroline looks like she is going to be bald for a while. Her brother looks so proud of his little sister!

  4. Charlie says:

    We are in Austin, TX. I guess we are bit far apart for a play date:). I agree on the CF thing and will probably do it just for peace of mind. I have talked with her pedi about it a million times and she thinks we would have seen some respiratory issues by now and there have been none. I think I have just been scared to death and feel like we have put her through so much. As you know, all of the testing, therapy, and appointments are crazy.
    We are going to attend the conference in PA 2014 and are super excited about connecting with other WHS families. Maybe if your family goes too we can meet up there! Your baby girl is just precious. I can’t wait to see more updates.

  5. Tamara says:

    What a beauty! She is soooo pretty!!! 🙂 We had same feeding issues, we lived to feed Cassie and put weight on her. I was worried constantly about Cassie’s calorie intake. But since we got g-tube my life got better, and we are doing more of other things instead of feeding her all the time. I know it is a hard decision to have a g tube surgery, but this was the best decision I have made for Cassie. She is almost 18 pounds at 15 months. She was about 10 lbs around 6 months old. And she is finally on a “normal” kids chart, and in the 5 th percentile. Good luck to you and your angel! It will all get better!

  6. Anitra says:

    Our Elsa isn’t much older than Emily Rose, but wow! Reading your post brought back so many memories! How you articulated what constitutes a poor, average and good feeding were so very similar to what we experienced. Emily Rose sounds very alert and her motor skills are excellent. She is beautiful, and you guys are doing great!

  7. Letty says:

    She is such a sweetie!!!

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