Last week we went to Wilmington, DE to DuPont Children's Hospital to see famous orthopedic surgeon and skeletal displasia specialist, Dr. William MacKenzie. I am glad we decided to see him, as we learned things about Amelia which our "regular", local specialists did not unveil (luckily we do not have to see him anymore!)
Dr. MacKenzie was a bit concerned about hypotonia in Amelia's legs, low muscle tone. Even though we know there is no rush with reaching by Amelia certain milestones like pulling up, walking etc. we have to do another MRI to rule out any spinal compression, foramen magnum as well as very rare lumbar stenosis. Amelia has very loose, flexible joints and that is definitely another reason why she is barely putting weight on her legs. Her physical therapy makes little or no difference in this department. There were also positive aspects of the visit. Dr. MacKenizie said that Amelia's legs are straight, no bowing, which oftentimes happens to be a problem associated with achondroplasia. Also her kyphosis, although moderate, is definitely flexible and should correct by itself once she starts walking. I guess PT and exercises we do at home help in this regard. Amelia was very well behaved during the visit, very patient, considering fairly long time we spent in a small room, four of us, mommy, daddy, Amelia and Ollie! Ollie was also very good as if he understood importance of this visit.
The nicest part of the trip was of course meeting our long-time bloger/facebooker friends -Sonya and her mom Melissa at the nearby Adventure Aquarium!
Zastanawialam sie co sie z talo z tym waznym postem na temat wizyty Amelki u specjalisty w Delaware, Dr. MacKenzie i spotkania z Sonya w Akwarium. Bylam pewna ze zamiescilam ten post i nie widzac go na blogu zaczelam podejrzewac jakis spisek, ze ktos mi te publikacje usunal! Zastanawialm sie co sie stalo z tym postem i nawet mialam zapytac stalych bywalcow naszego bloga czy go pamietaja. Jak juz prawie bylam przekonana ze przysnilo mi sie jego pisanie - otworzylam rubryczke gdzie sie edytuje teksty i tam sobie siedzial, zachowany na pozniej ale nie opublikowany! Po prostu piszac ciemna noca nie dokonczylam. Po czym zapomnialam o calej sprawie :-) I oto jest, napisany ponad miesiac temu:
W zeszlym tygodniu pojechalismy z Amelia do Wilmington w stanie Delaware na wizyte u slynnego specjalisty od dysplazji szkieletowych, chirurga ortopedy Dr. Williama MacKenzie. Ciesze sie bardzo ze pojechalismy bo dowiedzielismy sie rzeczy na ktore nie zwrocil nam uwagi jej lokalny lekarz ortopeda (ktorego jus na szczescie nie bedziemy musieli widywac). Dr. MacKenzie zwrocil uwage na dosc niska mase miesniowa w Amelki nozkach. W tym wieku powinna juz przynajmiej sie podciagac sama do stania. Ale oczywiscie nie ma pospiechu bo kazde dziecko jest inne. Jednak zeby wykluczc dalsza kompresje rdzenia kregowego doktor zarekomendowal rezonans magnetyczny, tym bardziej ze nie byl on zrobiony po Amelki operacji dekompresji rok temu. Amelka ma takze bardzo luzne, elastyczne stawy i to jest tez z pewnoscia powod ze jeszcze za malo obciaza nozki. Jej fizykoterapia wiec az tak wiele nie daje pod tym wzgledem jako ze wiaze sie to z jej anatomia a nie slabymi miesniami nog. Na szczescie byly takze i pozytywne aspekty wizyty u Dr.MacKenzie. Lekarz stwierdzil ze jej nozki sa bardzo proste, nie ma skrzywienia w palak, czesto wystepujacego u dzieci z achondroplazja. Jej kyfoza, wygiecie kregoslupa w dolnej czesci, ocenil na stopien sredni ale za to jest bardzo elastyczna i oczekuje sie ze ulegnie korekcji gdy tylko Amelka zacznie chodzic. Fizykoterapia pod tym wzgledem duzo pomaga, oczywiscie biarac pod uwage codzienne cwiczenia w domu, nie tylko wizyty dwa razy w miesiacu. W czasie wizyty Amelia bardzo dobrze sie zachowywala, byla bardzo cierpliwa zwazywszy na fakt ze czekalismy na lekarza dosc dlugo w malym pokoju (cztery osoby, mama, tata, oli i amelka!). Oli takze zachowywal sie wzorowo, jakby rozumial wage calego wydarzenia ;-).
Oczywiscie najprzyjemniejsza czescia calego wyjazdu bylo spotknie z internetowa kolezanka Amelki- Sonya. Znamy sie dzieki blogowaniu i przez Facebook, a teraz takze osobiscie! Oto jej blog:
http://swartley.blogspot.com/
Moms and babies inside the Adventure Aquarium

We all had great time, Sonya and Ami liked each other very much, Sonya is such a great hugger:
Ollie got to pet the sharks! Funny thing the little sharks were "asking" people to pet them sticking their heads above the water
Amelia and Sonya watching gorgeous fish in a big tank
A little break on the coral reef :-)
Sonya and Ami could be sisters! Amelia was very relaxed and confident with Melissa
Ollie showing a big fish swimming by!
View from the Adventure Aquarium - across the river beautiful Philadelphia skyline!
And there we are, one of the last pictures together, saying goodbye hoping to see you soon Sonya :-) Amelia exhausted by then!




Better to do the MRI and know that wonder. Glad she got a good report otherwise! What adorable pictures at a cool aquarium!
ReplyDeleteGlad to hear you had a good visit - we love the team at DuPont. That aquarium is great too, we got a chance to visit a couple years ago. Hooray for meeting blogging friends!
ReplyDeleteI think getting the MRI will be a good thing. It will put your mind at ease. I love the pictures of Amelia, Ollie and Sonya at the aquarium. It looks like they had a great time. It must be a great hands on place that the kids can even pet sharks! They kids are sooooo cute.
ReplyDeleteSo glad to hear that Ami is doing well! Hopefully the MRI will show that everything is fine! We will be praying for good results! We had so much fun meeting you all and taking in the sites at the aquarium! I can't wait to meet up again!!!
ReplyDeleteMRI's can tell us so much! I can't get enough of Amelia's beautiful eyes. Another great meet up. Great pictures of Amelia and Sonya.
ReplyDeleteGlad to hear that you had a good visit with Dr. Mackenzie! I hope you get good results from the MRI! Yay for meeting up with Melissa and Sonya! It looks like everyone had a great time at the aquarium! Love the picture of the three cuties on the coral reef!
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