Genetics Clinic

Because of FLs cleft lip and palate, birthmarks and some other factors, our pediatrician gave us a referral to a Genetics Clinic.  FL has already had a CGH panel run, which came out showing no abnormalities.  So, Genetics Clinic (provided by a state run program) was a "just to be sure" precaution.  I am also wishing that we had done the same for C, as I have so many new questions and concerns that have come up with hr possible CP, but she presents herself so normally and is quite brilliant (FL is, too - and though I am biased, I believe it is true!) that most every medical professional has laughed off my concerns.

The day started off rough, as Sam was leaving town for an extended period.  We were all a little blue, especially me!  The girls are pros at waiting for appointments now, so I usually don't worry too much about them!

The Genetics Clinic is put on by Children's Rehabilitation Services of Alabama through the state.  They have many other programs, and after meeting with a social worker, I found out that we qualify for the sliding scale of payment based on our income!  Also, there is never a copay.  The clinic was clean, efficiently run and the members of the team were kind and knowledgeable.  We met with a nutritionist (who absolutely fell in love with the girls - she spent a lot of time with us!) who took FLs measurements (she is on all American growth charts now and in many areas normal- yay!) and asked about her diet and eating habits.  She was very willing to answer some additional concerns I had about C and give me guidance in other areas of the girls' health journey.

The geneticist was kind and did a good exam of FL and looked at the different areas of concerns.  Even with those differences and her cleft lip and palate, he felt that she was just fine and needed no further testing.  He based this on his exam, my strong feelings that she is doing extremely well, cognitively and her CGH panel that showed no abnormalities.  He felt that if she had some sort of genetic issues, they would be showing up cognitively and all of her differences were "common" differences.  He said to watch her as she grows and develops cognitively.  He said, "the child will tell you!" In his thick Latin American accent.  : )

After seeing the doctor, we saw a social worker who explained more about the state's Cleft Lip and Palate Clinic.  Unfortunately, we would have to stop seeing our current craniofacial surgeon/team at Children's Hospital.  I have been advised by knowledgeable sources not to let the state team operate on my child, so this is not going to be an option for us, though it would greatly lessen our future medical bills.  FL is worth it and more!  We want her to have the best we can give.

Other than a double meltdown in the social worker's office and later in the restroom (I confess, it became a triple meltdown once we got into the hot car!) we had a great visit and I am going to look into further resources for both of my girls through the state, in addition to the private resources we are using for therapy and medical care.

If you have a child with CL/CP, please look into your state resources.  It may be well worth it!  If you have a child in need of therapy, please look into it as well.  Once our summer travels are over, I plan to really push to get the girls more help.  It is a joy, honor and privilege to have these precious girls to fight for, even if there are a few meltdowns along the way!

Physical Therapy and Speech Therapy Times Two!

Today was another big day for these two precious sleepyheads (aren't they too cute in pajamas?!)!  C and FL had their first physical therapy and speech therapy appointments.  They picked two horses (Rea Rea and Mark) to go on the journey with them!

We were able to print and fill out all of the paperwork ahead of time, which was fantastic!  The girls found a quiet corner to wait and read books to Rea Rea and Mark.

Everyone in the office was upbeat, helpful and pleasant.  It really makes things so much nicer!

Sam went with FL to speech first and C and I headed to PT.   Then we swapped activities.  Both sets of therapists were very impressed with the girls.

In speech, Flora Lin had great language comprehension!  Sam and I both have felt this all along, but it was good to have it confirmed.  She will often pretend not to hear you if she doesn't particularly want to do what you're asking!  Though having her palate repaired later than normal in the US, they feel she will have no problems catching up quickly.   She is behind on sounds, but it is impossible for someone to make consonant sounds with an open palate.  I was a little concerned with her using the signing over speaking, as it is easier for her just to sign something than to try and say it.  The therapist told me that it can become a crutch, so we will keep tabs on this!   FL will be having speech therapy once a week for an extended period of time.   Again, they were impressed with her and very hopeful, so it was great to know that our hard work was paying off!

In physical therapy, we were concerned about Flora Lin having low muscle tone (couldn't sit up in the bathtub well) and delayed gross motor skills.  In January, the International Adoption Clinic made us aware of this issue with her gross motor skills and we have been working on it diligently ever since.  I am happy to report that FL is now on the low end of normal for muscle tone and her gross motor skills are just great (she always had good fine motor skills)!  She does not need any physical therapy or occupational therapy!  Yay, Flora Lin!  Praise God for progress!

And Miss Charlotte?  In speech therapy she blew them away and is ahead of the game!  : )  My concerns about her pronunciation of s/consonant sound combinations (see goo bus for school bus, see gweter for sweater, eye see gream for ice cream) in words is a skill that is usually reached at about seven years of age.  They gave me a chart that had ages and the sounds expected for each one.  They give this chart to all of the moms that freak out a little too much over everything their child does or doesn't do.  ; ) Both speech therapists thought she was doing fantastic and to keep doing whatever we are doing with both girls.

In PT, Charlotte did great, but the therapist agreed that her hand/ arm is not 100%.  She did too well to qualify for any physical therapy (yay!) on a regular basis, but she did give me a list of things to do at home while we are on the waiting list for occupational therapy.   C has low muscle tone and strength I her upper body and neck.  We think that perhaps she skipped the crawling stage and didn't develop her arm, shoulder and neck muscles properly.  We are hoping to be provided a special tricycle at no cost that Charlotte tried out today.  It had pedals where the hands are so upper body is developed as well as a parent handle to give extra support and encouragement. We were put on a wait list, but hope to hear soon!  We will also be working on tossing weighted balls back and forth, climbing, some sort of hanging trapeze, wheelbarrow and crab walk in and running like an animal on all fours! : ). I think we'll be spending lots of time at the park!

Sam and I are so thankful for all of the progress that our girls have made.  One therapist commented, "Farm therapy is really working for your girls!"  The farm can be a lot of hard work and bringing the girls home hasn't been easy for any of the four of us, but it is so wonderful to see all of the things God is doing in all of our lives.   

We are also thankful for all of those that gave in so many ways.  Much of the gifts and gift cards were used towards buying things that would help the girls with their challenges (Ms. Lyn and Mr. Jim, yours bought this fantastic indoor trampoline!).  Thank you, thank you, thank you.

When we were paper chasing all the way through bringing the girls home, Sam and I prayed a very simple prayer for both girls each day.   We asked God to meet their needs, give them someone to love them and give them a sense of hope.  He has done just that, and I am thankful for those who did their best to care for Charlotte and Flora Lin until they could be forever in our family and I am thankful that I get to be their family.