Thursday, June 3, 2010

Finishing off week 2 in the body cast with Dylan.  He has his ups and downs throughout the day.  This morning he was crying a lot but then mostly happy the rest of the day.    Going outside solves a lot of the fussiness so we have been going on lots of walks.  The rash that was on his back last week has now gone away and his skin hasn't shown any signs of breakdown around the cast.  I am so glad, that rash looked pretty bad, I was a little worried that he was going to get a nasty sore/infection.  Keeping my fingers crossed that everything continues to stay well for the next 3 weeks.

Also, I forgot to mention it in the previous post but I have been concerned with Dylan's weight.  When he was brought into the hospital he weighed the same as he did one month prior when he had his back surgery -14lbs 5oz.  However, he did grow 3/4 of an inch and now measures 27" long.  I was actually shocked to see that he hadn't gained any weight.  He eats so much.  He is currently taking in about 28-32oz of stage 3 baby food/day, his milk intake has significantly decreased to between 6-12 oz/day because he would rather have food.  He also drinks water and juice during meal times, and he never vomits after meals.  I don't really know what else to do.  I try to feed him a good variety of veggies, fruit, meat, yogurt, etc... so I feel he gets a really balanced diet.  I also add baby oatmeal to everything to bulk it up and add calories, and I tend to pick the food that already has the highest calories/fat/protein, etc.  Why won't he gain weight?  What is it about WHS that makes them grow so slowly?  If anyone knows please shed some light, I would love to understand it more.  Our OT suggested Duocal to add more calories.  Does anyone have experience with this supplement?  Or should I stop worrying and just let Dylan be Dylan?

So to change the subject completely - we got the first set of results from the CVS testing - NORMAL 46XY- that's right it's a BOY!!!  We (Mitch especially) are very excited to be expecting another boy and of course relieved to hear that so far so good.  We still need to wait about another week for the microarray results.  The first set was just testing for Down Syndrome, and Trisomy 18 & 13.  I feel relieved but not all the way, not just yet anyways.  I will admit that I was almost crying at the thought of having to get rid of all of Hailey's adorable girl clothes that I have been saving for the past 4 years.  Girl clothes are much cuter than boy clothes if you ask me.  So there you go, that's all the news that I have to share. :)


  1. OH Mitch and Kristy...I wish I could run across the street to express my joy, but I'm shouting all the way from Iowa...I couldn't be happier for you and I admire your strength with all that you deal with on a daily basis. I'm just so happy for you and I'm sure you are relieved that everything shows positive results!!! Congrats and will be anxious to give you a hug when I return!! What is the due date??

  2. Congratulations on another boy!!! That is so exciting. Dylan will have so much to teach him. As far as feeding, we add coconut oil to each of Riley's meals, about a 1/2 tbsp. It has 120 cal per tbsp. We also add conocut milk, the whole fat kind with 30 cal per tbsp. WE add Omega 369 oil to one feeding. These may help if Dylan doesn't mind the taste. Since Dylan is clearing eating enough, I wouldn't be concerned about his weight. He is getting everything he needs, maybe just using it all.

  3. Kristy! Congrats on another sweet baby boy. Dylan will love having a little bro and I am sure his development will continue to advance as he shows his brother the ropes. :) I am so excited for you. Praying that the microarray is also normal! Did you guys ever get your chromosomes tested once Dylan was diagnosed? It is so rare that parents are carriers so highly unlikely that another child would have the syndrome.

    I thought for sure that Ken or I would be a carrier (really, me because of several genetic family diseases in my lineage) but our chromosomes came back normal. Our lab tested Ken and I for free when we had Norrah tested.

    Now, onto the weight gain... Like Hannah, I give Norrah Omega 369s once a day. I also used to mix salad dressing (high fat and calorie with only a tablespoon or two) into her food but haven't done so in a while because she has been eating so much other stuff.

    Like you I focus on the foods with high calories and high fats. Dairy is always good. And Norrah gets Pediasure to balance her nutrition.

    Well - this is the longest comment ever. So excited for you guys and your cute little family.

    Love ya.

  4. Hi Kristy,

    Thanks again for the microarray testing information and glad your tests are going well so far. Following a midwife appointment we have established that we are 6 weeks pregnant and are going to go for ammnio in due course. We had our bloods tested after Esme (born 1/27/10) was diagnosed with the submicro deletion and they returned normal (incl Fish on 4p whscr) but we still want to establish as to whether genetic lightening can strike twice so to speak. Happy but frightening time!

    Glad to hear Dylan is doing well. We saw our paed yesterday and he told us not to stress too much about weight gain (Esme being 7lb 10 now after being 2lb7 at birth being 10 weeks premature and now 7.5 weeks adjusted) as it is likely part of the genetic fingerprint to be small in stature. He advised that the immune system is the main focus and Esme recently and bravely fought off a virus without recourse to meds which hospitalised the (normal karyotype) baby boy who needed intubating so despite being small and whs the paed said you just cannot legislate for things sometimes. We can theorise all we like but sometimes its like 'see what happens'.

    We have found some WHS growth charts by the way and these can be found at this link:

    Kind regards,

    Sean & Amelia, Manchester, UK

  5. This was such a wonderful post to read for so many reasons. I have been thinking of you and Dylan every day since I heard about his injury, and I am glad to hear that he is feeling happier and that time in the cast is winding down. The news that you are carrying a boy made my heart leap-- I will pray every night between now and his birth that everything goes well and he is born as perfect as can be. It goes without saying that Dylan will love having a younger brother, but I also know why Mitch will cherish the chance to have this second son-- it's another child to carry on the family name and another child with whom he can share all of those special father-son moments...and according to my husband, that father-son bond is quite different than that shared between a father and his daughter. May every day continue to bring you and your family sunshine and good news! <3

  6. Big congrats on another boy!! We went through the CVS testing with Braeden and it was one of the hardest things I have ever had to go through. I am a carrier, so even harder for that wait.
    Those initial results are a very good sign. I remember getting those and knowing in my heart of hearts that everything was going to be ok.
    So if neither you or your hubby has the balanced translocation (like me), then I am pretty sure everything will be just fine!

    Weight wise...well! Do you have a dietician? Ryley was always tiny, despite eating lots. We did always add Polyjoule and make fattening food for him though.
    Dylan looks very chubby though, despite what the scales may or may not say.
    And it goes without saying that our WHS kids always seem to growth in length before chubbyness!


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