Friday, April 29, 2011
It's always nice to have your best friend with you !
Today Gemma had her blood transfusion . She had a great month but unfortunately her hemoglobin dropped too low and she will have to go back to having her transfusions every 3 weeks from now on . Her body could not handle the 4 week schedule. Her ferritin was also at dangerously high levels .
We met with the head of Pediatric Hematology at Hopkins ( for the first time, we usually see another Doctor but he happened to be on call today ) and he discussed her best options.
He asked if we had considered a bone marrow transplant . After explaining her adoption to him and the very remote chance of even finding a matching biological donor , he then switched to plan B.
She will have to stay on the 3 week transfusion schedule, increase her daily infusion (for chelation ) from 5 days a week to 7 , and possibly have a spleenectomy if she does not show improvement.
If any one knows of a way to find birth parents or biological family members of children adopted from China please email me . Right now Gemma is doing great and not in a crisis but the continual blood transfusions and high ferritin levels over time damage the heart , liver and spleen . Gemma has already developed some liver damage .
Last week the girls and I were sitting on the front porch waiting for Gemma's weekly infusion medicine to be delivered. As the delivery man came up to the porch Teresa looked down at his shoes ( Like she does with EVERYONE ) . I was a little afraid of what was going to come out of her mouth next. " Oh Mommy I luva his shoes " . He started laughing and thought this was quite amusing . He had on old black work boots . I don't think he had ever had a positive comment about his shoes before .
After he left I asked her why she liked his boots so much . " Because they are just like Gaston's !"
Her favorite movie and Princess are Beauty and The Beast . Even though she did not like Gaston because he was so mean to Belle , she loved his shoes .
Teresa had another great week . She had a cold but it only lasted a few days. I am amazed at how well she responds to every little bug that comes her way . I become very nervous every time she sneezes because it always turns into a cold and the Doctors have explained to us how dangerous an infection could potentially damage her already fragile health.
Thank you everyone for continually praying for Teressa . We are so blessed to have so many fantastic caring people always lifting her up in prayer .
Posted by Our Family at 4/29/2011 05:59:00 PM
Monday, April 25, 2011
Two days after coming home from China with Teresa , we stopped by our Church on our way to Hopkins for Teresa to meet Father Whatley .
She was still speaking Mandarin and understood very little English but she really seemed to make a connection with Father Whatley.
Several weeks later we started taking Teresa with us to mass on Sundays. On Sunday mornings she would become very excited about going to church and seeing Jesus. She loves to sing the Alleluia . I don't remember exactly when but one particular Sunday as I was holding her during Mass, she took her hand and turned my head to the altar and said , " Look Mom , I see my Jesus". Thinking she was looking at Jesus on the cross or the stained glass windows, I said " I know isn't that a beautiful picture of Jesus". To which she replied, " NO , I see MY Jesus up there ",pointing to Father Whatley . I explained to her that was Father Whatley and he was Jesus' friend who helped him here on earth . She became a little MAD and said " NO , HE is MY Jesus!"
Father Whatley was so instrumental in helping us to bring Teresa home . His spiritual guidance is what lead us to follow through with Gods will when we were so unsure of how we would financially pay for Teressa's adoption or medical bills. We were unsure of how to care for a child so ill and how to prepare our other children for her severe medical condition .
As we walked up to communion on Good Friday , she was whispering to herself, " I am going to see my Jesus, I am going to see my Jesus". As we came closer to Father Whatley , it turned to " Hi Jesus , Hi Jesus " and lots of waiving at him!
Father Whatley was the first person Teresa met after coming home from China . I know she calls him " Her Jesus", because she can see Jesus in him .
I hope everyone had as wonderful Easter Holiday . We were very blessed to have all of our children home with us for the holiday .
Posted by Our Family at 4/25/2011 08:17:00 PM
Saturday, April 23, 2011
Tuesday, April 19, 2011
After 1 1/2 days spent in the bank, at the MVA and on the phone canceling everything in our life ,all from one persons evil act , we decided to still go to D.C .Cupcakes . Thank you to Grandpop for treating the girls to this day !
This person I am sure has no idea how drastically he has effected our life . Besides from the things that were stolen , he has caused a lot of fear in 2 of the girls causing problems with sleeping and a fear of someone stealing them .
So today we decided to do something fun . We went to D.C. Cupcakes and were hoping to meet Sopie and Katherine but they were in L.A. taping for their show . The girls had a great time tasting all of the different flavors. Teresa loved it ! As we turned to leave I caught Teresa eating sprinkles off the floor ( Yuk) . She was in cupcake heaven .
Posted by Our Family at 4/19/2011 04:22:00 PM
Sunday, April 17, 2011
The good news is Teresa had another great week . She is feeling so well and loving spring time. We seem to have made it through the winter with only one major hospitalization and a few close calls. She did so much better than any of us thought possible . When her cardiologist explained to us at the beginning of winter all the possibilities that could happen over the winter flu months , we were all afraid she might not make it through the winter ... BUT she did !!!!! We are now into spring Yeah !!! Thank you prayer warriors !!! You carried her through the winter . We are eternally grateful to you all !
The other GREAT news is ... we have another wonderful daughter in law ( well almost )!
Paul proposed to Meghan last night ! We love Meghan ! She has been Paul's best friend since high school . She is such a sweet, caring and nice girl. They do not plan on getting married for a few more years because Paul would like to finish medical school and Meghan would like to finish PT school first . We are so happy for the two of them .
The bad news ... My car was broken into and my purse was stolen . Even though it will be a pain to replace my drivers license , bank card , broken window ... I had all of Teresa's medical records in my purse to be sent to Pitt. for a second opinion . I can still send them , it will just take me some time to recopy them all.
It is very disheartening when you work so hard and it is taken away so fast by someone who doesn't care at all. What little money we had saved for Grace, Eddy and Mary's Birthday this month was taken also .
I know , I should not have left my purse in the car , believe me , I have learned my lesson !
Posted by Our Family at 4/17/2011 09:17:00 PM
Wednesday, April 13, 2011
Teresa is having another wonderful week . She looks great and has so much energy .
For someone who's oxygen is between 75-80 , I am amazed at how well she functions on a daily basis . She does not want to miss anything !
Living so close to DC. I have always wanted to see The Cherry Blossom Festival but have never gotten around to it . These past 8 months with Teresa we have tried to let her experience everything possible, so we decided since she was feeling so well and the weather was suppose to be beautiful we would go .
She loved all of the sites and had a fantastic time making her own little kite to fly !
We stopped at DC. cupcakes on the way home . The girls were so excited ... until we drove by and saw the enormous line, over a 2 hour wait . Maybe next time .
Posted by Our Family at 4/13/2011 09:50:00 PM
Friday, April 8, 2011
Last night Teresa had her sleep study to make sure her oxygen level was not dropping too low while she sleeps. I explained to her it would be like a sticker party with stickers everywhere . At first she thought wow this is going to be fun , but her opinion quickly changed as you can see from the photo. She did great though and did not cry or complain .
Waiting for the results ...
Posted by Our Family at 4/08/2011 04:10:00 PM
Tuesday, April 5, 2011
Yesterday was Alex's 20th. Birthday ! We celebrated with our Chinese candle (blow torch ) we bought while in China . Alex had to move back home from Alabama a few weeks ago due to no fault of his own . Because of our financial situation we could not afford the tuition and he could not afford to graduate $ 100,000.00 in debt. He loved the school , his classes , new friends and he even joined a fraternity . He was very disappointed .
So now he is working full time saving his money and will return to Towson in the fall. It is what it is and I believe everything happens for a reason .
Alex has always been a great son . While we were in China adopting Teresa he took care of Mary , Emilia and Gemma . He cooked, cleaned, took Gemma for her blood transfusions and made sure Emilia's leg did not get infected or have any complications. He was so responsible we had complete trust in him . His goal is to be an Orthopedic Surgeon . After seeing Emilia's legs and how mangled they were when she was adopted he has decided to make this the field he will major in . I know he will make a fantastic , caring Doctor .
Lucy started not feeling well yesterday . This morning her lungs were making all kinds of snap , crackle and pop noises. She has pneumonia in her left lobe and the right middle lobe has partially collapsed. So back on antibiotics , prednisone, albuterol, flovent and Tylenol. This evening she started feeling a little bit better.
Just hoping Teresa does not get this !
So far this week Teresa is feeling great . She has had a few times during the week when her oxygen dropped below 75 and she required the use of oxygen but for the most part she is doing fantastic .
Thank you for continuing to keep her in your prayers. Your Prayers have carried her through the winter .
Posted by Our Family at 4/05/2011 07:32:00 PM