snow

Grace had so much fun building this HUGE snowman with her friends !
Gotta love the winter !

Poor Gemma is still not feeling well . This morning I went upstairs for 2 minutes to dress Teresa and when I came back down this is what I found . Gemma asleep on the kitchen floor! She is so tired from the pneumonia and with her hemoglobin also being so low it is causing her to have very little energy .

Teresa had a great day today . She stood at the front door watching the snow fall with so much excitement. She says " I luva the snow , I luva the snow ".

School ?

We have been debating whether or not to send Teresa to pre school next year . we have been advised both ways , one Doctor said "Let her experience everything and don't keep her in a bubble " another said " I would advise against exposing her to all of the germs that are in pre school class rooms. " She watches every day as her sisters go to school and often asks " When can I go to school ?"

Pre school registration for September is taking place now so we have to make a decision soon . I don't want to expose her to viruses unnecessarily but at the same time I want her to experience the same things other children do .

So today we went and visited a pre school class . She was so excited that's all she talked about all day . "Her school" was so much fun . She couldn't wait to get home to tell Gemma all about it . Seeing how excited she was made the decision so much easier . Now the hard part is having her wait 8 months for it to start . As we drove to school this afternoon to pick up the girls she started yelling "There's my school , there's my school. Can i go again ?"

Lucy - I think I spoke too soon on Saturday about Lucy and how she was doing from her surgery . Saturday night she started having severe bladder pain and the pain was radiating to her kidney , she then started vomiting . After speaking to her Doctor he wanted her brought to the ER to make sure she did not have an infection or blocked ureter . After many tests it was discovered that the surgery had caused severe swelling in her bladder and kidney and this was the cause of the pain . So they increased her pain meds. and antibiotics and we are keeping a close watch on her .

Gemma- still no results from her ferrascan . But poor Gemmma has another infection . She started on Saturday night with a very high fever . She is also coughing terribly . I took her to the doctor today and she has pneumonia and a ear infection . She is scheduled for her blood transfusion next Wed. .The last time she was this sick her Hemoglobin dropped one point every day . Infections and fevers really make it drop fast . So we are keeping a close eye on her levels .

Teresa - was so happy today going to school . She loves to experience new things and this was so much fun for her . Unfortunately she must have sneezed over 100 times today and her nose has started to run . We are praying that she is not getting sick or catching Gemma's virus .

Thank you for keeping her in your prayers !

Lucy' Surgery

Yesterday Lucy did very well with her surgery to repair her ureter in her bladder/kidney . She had a non invasive procedure done using deflux which helps to relocate the ureter to the right position and stop the reflux. She was born with a solitary kidney which had a grade 5 reflux ( the worst kind ) from the bladder leading into the kidney . Over the past 3 years it has improved to a grade 3 reflux .( this is still not good but better than before) . In One month she will have more renal testing done to see if there was any improvement , if not she will then have the more invasive surgery to reposition the ureter.

Gemma had her ferrascan last Tuesday and did great . We will have those results on Wednesday . We are really hoping her iron levels have dropped and she does not have any more damage to her liver .

We had a new button made for the blog for Teresa. It is on the right side . If you would like to post it and help spread the word of Teresa's miracle , we would be very grateful ! Thank You

Facebook

Thank you Tary for creating the facebook page.
"Praying for Teresa B"

http://www.facebook.com/home.php?sk=group_123147934420958

The prayer cards will be mailed out shortly to everyone who asked. Unfortunately my scanner is not working right now and I can not scan them in , so if you would like some just email me your address . Thank you (mykidsmom1986@yahoo.com)

For the past 2 weeks , Annabelle (Grandpops new puppy ) has brought Teresa so much happiness . Is there anything better than puppy kisses with puppy breath ?

Tomorrow , Lucy is having surgery on her kidney . Please pray for no complications and a speedy recovery .

Prayer Cards

Thank you everyone for requesting prayer cards for Teresa. Right now my scanner is not working so I can not scan them in and my boys are away at college . ( they are my computer helpers. I am not very good with the computer). Anyway, If you would like them just send me an email(mykidsmom1986@yahoo.com).

Someone suggested a Facebook page -"Pray for Teresa". I think this is a great idea, but once again my computer help is gone and I am not quite sure how to create this . So if someone would like to help me with it , Please just let me know.

Also "K" asked why Teresa would not be a candidate for a heart lung transplant. I am sorry for not explaining this better.
As the Doctors explained it to us; A heart transplant is an operation that children do very well with and have a very high chance of surviving. A heart and lung transplant is a very hard operation for children to survive. children with cystic fibrosis survive this procedure better than children like Teresa with High pulmonary pressure . Several Doctors have advised us against having this done . They ALL felt she would not even survive the operation . Her Heart and Lungs are so weak right now that she could not tolerate the operation .
She needs a miracle !

Teresa's Miracle

First let me say " Thank you " to everyone. Thank you for all of the prayers, kind words and unconditional love and support. I know everyone has been praying for Teresa and I want everyone to know how VERY grateful we are to you all !

I really debated about whether or not to write this . I felt I would not be doing everything I could for Teresa if I did not.

When we adopted Teresa we promised to do everything we could medically to help her . We knew she was our daughter from the moment we saw her photo. (This is a very long story that started many years ago that is filled with unbelievable turns of events that GOD orchestrated. I promise to post this story later). For the past six months Teresa has stolen our hearts.

Going to CHOP last Friday and hearing all over again how very ill she is has brought back emotions that I had put aside. With the daily routine of life it is easy to get caught up in these routines and not face reality . I have been so busy with the Holidays , doctors apt., surgeries, moving 2 kid back to college that I have been in denial about Teresa. She has been doing OK, she had 2 illnesses but she seemed to come back OK from them and she is looking OK and gaining weight . Everyone says how great she looks. So it has been easy to be in denial about her health . Maybe she will beat this , maybe she will live a very long life, maybe, maybe maybe...
But on Friday hearing the Doctor say "Yes, this is good news her pressure has come down a little, BUT, her heart might not make it another year" , was like a slap in the face that knocked me back into reality .

So this is why I am writhing this post. I need your help . For the past six months I have researched every detail of Teresa's heart and lung condition . We have taken her to the best Doctors, we have gotten second and third opinions . I have not left one stone unturned medically for her . I promised six months ago to do everything medically possible for her , and we have. Only GOD can save her now ...if this is HIS will. I love Teresa with all my heart but I know GOD loves her more and I know He has a very special plan for her life. Her entire life so far has been a miracle .

I am asking everyone, from one Mom to another , one friend to another , one adoptive parent to another ... to PLEASE ASK EVERYONE YOU KNOW TO ASK EVERYONE THEY KNOW TO PLEASE PRAY FOR A MIRACLE FOR TERESA'S HEART AND LUNGS TO BE HEALED. PLEASE PRAY ,PRAY , PRAY !

I am no longer knocking on Heavens Door , I am banging on Heavens Door.
I want God to be tired of hearing the name , "TERESA ".

Pope John Paul 2 needs one more miracle to be canonized. This is who we are asking to intercede for Teresa to be healed. If you are not Catholic , please feel free to pray in your own families religious belief. We are praying to the same GOD and we are grateful for ALL prayers !

Please help us pray for this miracle by telling everyone about Teresa's story .

I am making prayer cards for Teresa. If you would like me to mail you some to give out please email me -mykidsmom1986@yahoo.com

I am doing this because I have to know that I did everything medically and spiritually possible for Teresa.
Thank you for every ones help!
"Where there is great love , there are always great miracles" Mother Teresa

6 months Home

We finally arrived home on Thursday !!! What an unbelievable week . Thank you to everyone for your offers of help .

Today we headed up to Philadelphia for Teresa's exam at CHOP . We were really praying for some good news and guess what... we got some , well at least a little and that's better than none.
After all of the testing we met with Dr. Rychik and Katie RN( she is head of the single ventricle survivor ship program ) and it seems that the sildenafil is helping to stop some of the deterioration of her lungs. It is not improving the damage already done but the good news is it is helping a little to stop more damage from occurring and that is great news . Her medicine will now be increased to almost double the strength and rechecked in a few months . We are praying that her pulmonary pressure will continue to drop.If her pulmonary pressure does not drop she will never be able to have surgery on her heart . Her heart is so damaged that Dr. R does not know if she will survive another year because her pulmonary reserve is already so low .
The other good news is she has gained almost 7 pounds and is now 36 inches tall!
Her oxygen was 78 today and her color was good .
The other suggestion was for her to start her Make A Wish . With her feeling good right now she would really be able to enjoy it . This is such a sad process to think about but something I don't want her to miss because she will really enjoy it. I already know what she will wish for , to be a princess. A few weeks ago I called her to come and eat and she turned around , put her hand on her hip and said " I am not Teresa , I am not Fang Fang, I AM PRINCESS " I guess the princess has spoken.

We are very grateful for this little bit of good news . Please continue to pray for her pulmonary pressure to decrease and for her to stay free of any viruses or other illness.

NO SALT TRUCKS!!!!!!

Does it ever snow in the south? Apparently only when we arrive and guess what ...there are no salt trucks, snow plows or salt domes in the south !!!!

We moved Alex into school on Sunday and planned on heading back home on Monday morning, but Alabama was blanketed in snow and ice. We waited until late afternoon Monday to leave because the roads appeared to be more passable. We headed north for 70 miles and then the roads were totally impassible , totally covered in ice. Cars were laying in the ditches and a tractor trailer had jack knifed across the road. The exit ramps were covered in ice . We finally made it onto the ramp and found a hotel to stay in . The hotel unfortunately had no restaurant and all the local restaurants were closed .
What an adventure. What should have been a 14 hour drive home has now turned into a 3 day nightmare . We are praying the roads will be passable tomorrow.

Teresa has done very well on this trip .We packed One whole suitcase full of her medical equipment ,medicine and oxygen. I wasn't sure about traveling so far in the car with her but she loves watching her movies and sleeping in her car seat. She has gotten a lot of much needed rest. So far so good.
We brought 3 girls with us and left 3 at home with Grandmom . We all could not fit into the car with all of Alex's stuff.

Another adventure we had on this trip was the addition of a new member of the family. For the past month we have been puppy sitting Paul's Boston terrier -Dewey.
Grandpop fell in love with him and wanted us to get him one from the same breeder in Atlanta. So after dropping Paul off at school in Atlanta we headed into the sticks of Georgia . This was another crazy adventure. We drove through the woods ,over many dirt roads and into a very remote area of Georgia . We got lost but eventually made it . They turned out to be the nicest country folk. Here we learned " Their Story " . Life lately seems to be having us learn about others and hearing their story . Everyone has a story . Along this journey it has been so enlightening to hear others tell of their lives. The girls favorite part of Their Story (i am not sure why they felt the need to tell us so much , but it was very interesting ) was the part of their pet deer. The deer would walk in the front door , sit on the couch and even sleep by the fire place. We really enjoyed visiting with them and I now feel like a part of their family . It finally was time to pick out Grandpops new puppy and head on our way to Alabama.

The girls named her ...Anna Bell Georgia !She is 6 weeks old and absolutely adorable . Mary , Emilia and Gemma can not wait to meet her .( I have to keep reminding the girls that Grandpop paid for Anna Bell and it will be his dog ).

Praying we get home soon and safely .

Not Bouncing Back

We had such a wonderful Holiday with Teresa. It was my goal to have her celebrate her Birthday and Christmas at home and feeling well , and she did. She had a fantastic day filled with so much excitement. Then the day after Christmas she started with a fever. The fever (103.5) lasted for 4 days . We had many trips back and forth to the Doctors and luckily avoided a hospitalization . This virus like all the others has taken it's toll on her little body . She is still VERY tired , requiring 2 naps every day and she is asking to go to bed every night at 7.

The Doctor warned us that she would have a slow deterioration of her health .
I am really praying it is just this one virus hanging on and will leave her little body unharmed and back to her base line very soon .

We are scheduled to return to CHOP on January 14th.to see if she has had any improvement in her heart and lung function from the medicine. Please pray for some improvement ,any improvement would be so great!

It never seems like we have a dull moment. Last week Emillia decided she was going to run through the house with out using her walker and ... you guessed it , she fell and cracked the top of her cast. After many hours spent at the Hospital, she was re casted . Luckily nothing was broken . She is so anxious to be able to wear her new shoes she got for Christmas.

Gemma had her blood transfusion today and did very well. Unfortunately her Ferritin levels are still dangerously high . She is scheduled to have a Ferrascan (High tech. MRI) done on January 18th. This will tell us how damaged her liver and heart are . Last year it showed her liver was becoming very damaged from the excess iron build up . We are hoping this scan will show some improvement.
She is still doing ok from her daily infusion except for the fact that she cries so hard before each one. We are going to start using a numbing cream to try and alleviate some of her anxiety from the pain .

Lucy is scheduled for surgery on January 21. She was born with a solitary kidney and has had a large reflux from her bladder into her kidney for several years. In an attempt to save her kidney from further damage she will have surgery to correct the reflux. We are praying all goes very smoothly with out any complications.

So there you have it . Never a dull moment at The Bartlinski House. Oh I forgot to mention ,we are moving Alex to The University of Alabama this month also .
I am tired just thinking of what we have to do this month .

Praying for spring to come soon .

2010

What a year. It was one of the hardest years for our family spiritually , emotionally and financially . Our faith was tested in so many ways. The year started us on a journey that at times I was not sure we could complete. When we took the leap of faith to adopt Teresa , I never new how deeply our lives would change. God has opened our hearts to so many things through Teresa . Things that you can only experience through a child that was once an orphan and who's health is so very fragile. Many things I can not put into words because they are so deeply personal between Teresa and myself , they are only felt within our souls.

When we adopted Teresa I had no idea that this was going to be a turning point in our lives that would open our eyes to our purpose here on earth .

Even though it has been the hardest year of our life, I would not change one moment of it.
God has woven us together as a family and through Teresa He has taught us how to love deeper.

Our journey through 2010 was difficult but priceless.
I pray God will continue to share Teresa with us for many more years, we still have so much to learn .