Thursday, August 4, 2016

Two [and Two and a Half] Year Update!

Claire turned TWO in June!  We have had a busy summer but I wanted to take some time to update everyone who has supported us with prayer and encouragement so faithfully.

First .... Pictures!!!







STATS:
Claire is 32.25" (9.08%) and 24lb 5oz (12.0%)
Amelia is 31.5" (0.05%) and 23lb 9oz (4.41%)

PHYSICAL THERAPY:
Claire is WALKING!  It's wobbly but she's doing it. She is working on walking more steadily.
Amelia is bear walking, standing up straight, and walking along furniture! She is working on climbing and squatting now.

SPEECH THERAPY:
Claire signs more, eat, and milk. She says mom, dad, and up. She is working on following simple directions, drinking from a cup, and verbs: kiss, hug, kick, sleep.  She is also working on the signs: open, close, and help.
Amelia is taking small tastes of crackers, pirate's booty, and applesauce. She is working on exploring food on her tray, coming to her name, tolerating playing around other kids, and increased tolerance of food in her mouth (applesauce and crackers).  She also found her VOICE this month (!!!) ... before this, we have only heard her grunt and growl.

CARDIOLOGY:
Claire's 2-year check up is coming up this month
Amelia is being monitored and will have her ASD closed when she is bigger.

PULMONOLOGY:
Claire struggles with O2 levels and respiratory issues when she has a virus.  She was hospitalized at the end of June for this but recovered well.
Amelia has pulmonary stenosis and asthma but we have had no recent issues.

GI:
Claire is going to trial being off of reflux meds. We are starting a digestive enzyme and probiotic. She is also starting a new multi-vitamin that is specifically formulated for kids with Ds. She is on miralax to help with constipation and we monitor her bowel movements carefully and she also  takes DHA/omega-3.
Amelia is going to trial a safer reflux med twice/day and start a digestive enzyme and probiotic. She is also starting the multi-vitamin and DHA/omega-3. Amelia really struggles with bowel movements... she takes miralax and gets water through a feeding pump overnight [and we have tried many other things that haven't worked]. We are trying coconut oil in her bottles now as well as switching to a new formula. Amelia has been losing weight steadily over the last couple of months.  To hopefully help with both her weight gain and her bowel movements, we are trying a prescription formula that she can drink orally or we can put it in her g-tube.  We are hoping that she will drink it so that it doesn't set back any of our feeding therapy progress!  This new formula will also be a BIG blessing as her current formula (infant formula) is EXPENSIVE when it is the sole form of nutrition for an almost 3-year-old!! The new one is formulated specifically for tube-fed children (not babies) and will be a better fit for her nutritional needs.

SURGERY:
Claire is doing great, we are just treating her for constipation.
Amelia has now had TEN silver-nitrate treatments for her granulation tissue and has been using twice/day steroid cream almost constantly since April but otherwise, she is doing well. She had her feeding tube replaced yesterday.

VISION:
Claire's is perfect! She will continue to be checked every 6 months due to the high-incidence of issues with vision for kids with Ds.
Amelia's full prescription is -10 and she has nystagmus, strabismus, and astigmatism. Her current glasses are -5 (giving her the vision of what a -5 person would be able to see without glasses -- this is not taking her other vision issues into account) to help her to slowly adjust to wearing the glasses and to the change in her vision. We will work up to the full prescription as she can tolerate it. She IS wearing her glasses fairly regularly now!

HEARING:
Claire has ear tubes. She will have her hearing tested every six months because she continues to struggle with fluid-related hearing loss.
Amelia also has ear tubes. She has mild, permanent hearing loss in her right ear and her hearing in her left ear is good.

ENT: 
Both Claire and Amelia have an appointment next Friday for surgery follow-up (adenoids / ear tubes) and they will continue to be monitored for sleep apnea and probable tonsil removal as soon as they are big enough.

UROLOGY:
Claire's right kidney has scarring and is small due to a bad kidney infection when she was three months old (right before heart surgery). We just keep an eye on it but she is doing well.
Amelia isn't followed by urology.

I think that's everything!  The girls really are doing well.  They are FINALLY starting to interact with each other a little bit which is so fun to see!  They haven't wanted anything to do with each other for such a long time.  Amelia made HUGE strides this summer with our kids from Poland.  All of the extra attention was therapy for her, she is looking around, standing upright, and has chunks of the day where she is seeking out others to play and interact with her.   Now if only she would start sleeping ..... ;).

As always, thank you for cheering us on <3.  Sometimes "our down right beautiful life" can feel overwhelming but it is ALWAYS a blessing!  We appreciate your prayers, love, encouragement, and practical help along the way, it truly does make a difference.

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