Christmas Through Teresa's Eyes

Experiencing Christmas through a child's eyes is always exciting but experiencing Jesus, Santa, Presents and Christmas morning for the first time through Teresa's eyes was magical. Having Teresa with us for Christmas this year was the best Christmas present ever . Five months ago we were not sure if she would be here. We are so grateful that God has given her to us and shared her with us for this long .
The look of pure joy on her face was priceless. With every gift she opened she would put her hand across her heart and say "AHHH , is this for me, thank you !"
Please continue to pray for a miracle , for her heart and lungs to be healed .
Thank You everyone !
I hope your Christmas was just as magical as ours !!!

Christmas Cover Story

Last week Kathleen Cairns from Fox 45 News asked us if she could do a Christmas cover story on our family. It is our hope that someone out there might hear our story and open their heart to adoption ...

Take a look on the right side to view it .
Thank You Kathleen !

Gemma's New Medicine

Yesterday the home nurse came to teach Ed and I how to administer Gemma's new medicine . She will receive an 8 hour infusion of Deferoxamine 5 days a week . Today we were on our own but everything went very smoothly with no problems. She loves her little ladybug backpack that stores her pump. So far so good with no side effects.

Everyone is doing great and so far no one has gotten the virus that made Gemma so sick 2 weeks ago . I thought for sure Teresa would get it because Gemma and her are so close and do everything together but she is doing fine .

Tomorrow Teresa is going to help me make her Birthday cake . She is so excited. Of course she picked pink icing for her princess cake !

Teresa's First Snow

Today Teresa experienced her first snow fall. She loves to watch Frosty the Snowman and knows almost all the words to the movie. Her favorite line - No money , No Ticket ! She was so excited to go out and play in the snow like Frosty . We only stayed out for a few minutes because the cold weather really makes her turn purple, but she loved every minute of it !

Over the weekend we went to have lunch with Santa at
The Knights of Columbus with Grandpop. Teresa was so funny, as soon as Santa walked in to say hello to all the children she took one look at him and yelled " That's not Santa!" It was so funny , it reminded me of Buddy the Elf in the Elf MOvie when he saw the fake Santa .
The only thing she wants for Christmas is a Frosty the Snowman .

A quick update on the girls:
Last Friday Teresa's appointment at CHOP was canceled because the Doctor had a family emergency . So now we will have to wait until January to see if the Sildenafil is improving her lungs and heart function . The winter has definitely been more difficult for her than the summer . Most days I dress her in 3 layers of clothes to keep her warm . Her lips , hands and feet are a lovely shade of purple almost continuously now . Her oxygen is hovering around 72 .

Gemma was doing better over the weekend and then on Monday she started with pneumonia. She is finally doing much better with antibiotics and a nebulizer treatment . We know she is back to her good old self because she is eating everything in sight.

Emilia is doing great with her cast . Hopefully she will have it off in January .

5 Months Home !!!

Not a Good Day

Gemma went to the infusion clinic yesterday to have her test run with a new medicine she is starting to lower her ferritin levels. Everything went well with the medicine and she luckily had no side effects so next week the nurse will come and train Ed and I . Around 10 am. while in the clinic she started running a very high fever and coughing . She looked like she was coming down with a virus. The Doctor thought it was a good idea to do blood work and blood cultures to make sure it was not bacterial . As the day went on she became sicker and sicker with a fever of 104. This morning we returned to the clinic for her blood transfusion but because she was so sick she could not have it . The Doctor said her body would destroy all of the good blood because of the infection and she would not hold onto the transfusion long enough which then would require another transfusion . Since we are trying not to over transfuse her he decided to wait until next week . So hopefully in a few days she will be over this nasty virus ( Human metapnuemo virus).
We are trying so hard to keep Teresa away from her so she will not get it but this virus is so contagious I don't know.
With being in the hospital 2 days this week and 2 days last week we really are seeing the need for some kind of help with the girls when I am gone . It has become so difficult trying to juggle 7 different schedules and then when one is sick or has surgery it really throws everything out of balance . We really need someone that is available on short notice for emergencies or when one of the girls has surgery .

Praying for God to send us the help and for Gemma to recover quickly and Teresa NOT to get this virus.

Last week I received a phone call from two of the girls Doctors. This always makes me a little nervous because it never seems to be good news. Lucy's Genetics Doctor was calling to give us the results of the genetics testing that she had over the summer . She has a deletion on chromosome x in the region of the gene for Duchennes Muscular Dystrophy. The good news she said was since girls have 2 x chromosomes that the other x will take over and she should not develop the full blown disease. The bad news is she is at a very high risk for developing cardio myopathy . She will have to have a thorough heart exam every year to monitor her heart function . If she has children her son would have a 50 /50 chance of developing the disease and a daughter would be a carrier. But the really great news is SHE CAN ADOPT!!! When we adopted Lucy 4 years ago the only special need that was in her file was cleft lip and torticollis. Lucy has become the poster child of all the "Unknowns " that you are to be open to when adopting a special needs child. Every organ in her body is affected with some health problem that we did not know about when we adopted her . The first year home , it seemed like she spent more time in the hospital than at home. But after 4 years home she has grown stronger and stronger each year. She is now doing great ! In January she will have surgery on her solitary kidney, but that should be the only surgery for her this year . This little girl has been such a joy . She has the most contagious laugh of anyone and can make me smile just by looking at her .

The other Doctor that called was Gemma's Hematologist. He was calling to tell us the next step in the attempt to remove the excess iron from her body . Since the daily dose of Exjade was not working and producing too many side effects , the next option is a daily infusion . She will go to the hospital on Tuesday for a test dose to make sure she does not have any reactions and then the home nurse will come to our house and train Ed and I on how to administer this daily . ( Yeah) We are praying this works because the final option is to stay 4 days a month in the hospital on IV. chelation . Gemma will then have her blood transfusion on Wed.
Gemma has the cutest little personality and boy does she love to eat . She can smell food a mile away. Her big Buddha belly grows larger every day and she love her best friend ... Teresa.

Teresa , well she is doing OK. I don't think she has gotten back to her base line yet . (before she became so sick last month from a common cold). For the past week her face and eyes seem to be a little puffy , she also has a little cough that comes and goes . We head back to CHOP on Friday to see if the Sildenafil has had any effect on her lungs and heart . I can't say that I think it has made a difference but I am hoping the echo will show better results. She continues to have the best attitude about life . She walks around all day telling me how happy she is . From something as little as singing a song in church (her favorite church song is the Alleluia , and when it comes time to sing it I think the whole church can hear her) to making Christmas cookies, she just loves life.

Experiencing life through Teresa's Eyes has been such an amazing journey . Even on the bad days she finds such joy in the smallest of things. I never thought one little soul could teach me so much . I see now how much I really do not know about life.

Enjoy the little things in life... for one day you'll look back and realize they were the big things.

Emilia's Leg

For the past 8 months Emilia's leg was slowly being lengthened . Yesterday she had her external fixator removed . Her right leg is now the same length as her left leg !!! She is so happy .
The plan was to remove the ex fix and insert a rod into the bone from the hip to ankle for support, but this was unable to happen because she had an infection in the bone from the pins. So now the plan is to stay in the full cast for 8 weeks and then re evaluate her leg and maybe insert the rod in 8 weeks when the infection is clear.

Her future will require several more operations on both legs and her arms but she has such a positive attitude , she never complains and just keeps smiling .

Happy , Happy , Happy just to have a leg like everyone else .