Friday, March 27, 2009

Week of the Dr visits!

Just a quick review for all of you who have been waiting for the highlights of the 5 dr's appt's Grace and I had the past few weeks. Sorry this has taken me a while to update. It's just been one of the crazy busy weeks.

1st appt. on Wed 3/18/09 with Dr. Werran with Children's Hematology at Children's Hospital of the Kings Daughters in Norfolk, VA:

Grace had several blood tests run to see if she had any blood clotting disorders that might have caused or could cause a blood clot (stroke) in the future. She was found to have low Protein S but from what I could understand (and this was the most confusing of the tests run) that she does not need to have any medical treatment for this. The chances of her bleeding from a blood thinner are greater than those of a stroke. So, all in all this is very good news. Her Dr. was curious to see the results of my blood test, however, to know if there was anything else he should be testing her for. This is an ever changing and growing diagnostic with the type of testing changing every day. She will go back in 6 months for another follow up. This is the best I can do in explaining this. We just know it is good news and are praising God it isn't something that requires medication!

2nd appt on Thursday with Dr. Lewis, Head Paediatric Neurologist at the Children's Hospital of the King's Daughter in Norfolk, VA:

This was a follow up with Dr. Lewis to go over different tests we had done. He still concludes that we may never find what caused the stroke in utero. Most likely it was caused by a blood clot in the placenta. He also assured me that the chances of it happening with this next child is 1-3%. So that was reassuring to say the least. He reminded us that the risk of seizures with children who have experienced a stroke are higher and went over what to do if she does have a seizure. He also went over the importance of stretching her right leg and arm because the spacticity and tone are what cause the muscles to be so tight. By stretching them daily you are relaxing them and preventing them from getting tighter or worsening. Other than that he seemed very pleased with her cognitively. She is speaking at an age level above her 11 months. We go back to see him in 6 months. Overall a very encouraging appt. A lot more so than the first time we saw him and got her original diagnosis.

3rd appt with Dr. Ferebbe, OB ( this appt was for me and baby surprise)

I had an ultrasound and saw the baby. His/Her heartbeat was strong at 155 bpm. It's so amazing to see how fast they grow in just four short weeks. Baby surprise went from looking like a peanut to an actual baby with arms, legs, and moving all around. It's truly a miracle. Matt and I are anxiously waiting to see if baby is a little brother or a little sister. Either way we are praying for a healthy, happy baby. If we could have another little Grace life would be wonderful!
I did get the results of my blood work but I have to go back on April 1st for clarification. My OB was away so I saw the nurse practitioner who consulted with another on duty OB and concluded that I was not a High Risk Pregnancy! PRAISE GOD! But I will find out more details at the next visit with my OB.

4th appt with Dr. Shelton, Dr. of Rehabilitation

We were referred to Dr. Shelton by our pediatrician. She was great! They basically make sure you are receiving all the resources available to you including PT, OT, equipment such as braces, or whatever the child might need. She was very impressed with Grace and said she is a very mild case and will do wonderful with her assigned treatment plan. She went over the importance of stretching, told us about botox injections that helps with the tightness in the muscles. It's also a less invasive treatment as opposed to surgery. Basically if we decide this would work for Grace, she would get injections every 4-6 months. Can't believe Gracie will get botox before me! hahahah!
She did say Gracie will need a special glove (made from the same material of a wet suit) and an AFO (ankle foot osulator). The glove she will wear during the day (this helps her keep her thumb out and her hand more relaxed). The AFO she will only have to wear when she is putting weight on her legs. I was able to see both from her PT. This is hard to hear but if it will help her then of course we are on board. We are also starting OT very soon. Lots to learn but everyone is very optimistic and wants nothing but the best for Grace. It's just overwhelming sometimes because I still feel so new at being a parent let alone being a parent of a child with a special need. But God is good and He promises not to give us more than we can handle.

5th appt. suppose to be hearing test but ended up at the Pediatrician

Gracie had an extremely high temp. and wasn't eating or sleeping much at all for a few days. The did a flu and strep test, blood work to look for a bacterial infection, and checked her ears. All came back negative. They attempted to collect a urine sample (impossible if you ask me for anyone who is still in diapers). Luckily her temp. broke the next day and she is sleeping longer and eating more than ever. She has even transitioned into one nap a day which helps me get alot more done and allows me more time to play and focus on her when she is awake cause I'm not wondering when she is going to go back to sleep. My little girl is growing up!

That's all the dr's appt's for now. THANK GOD! I am worn out! Thanks for all your prayers and continue to pray for wisdom and guidance for Matt and I as we are on this journey with Grace and are trying to make sure we are doing everything possible to give her everything she needs!