Emma’s Journey: May 2009

Kaila had a hoedown this week and I took Emma with me. She get so much joy out of being around people. She was really cute, this was us getting ready to do the hockey pockey

Emma's Dr. Appointment

Emma had an appointment about a week ago. We found out her results the day before but he went more in depth with me at the appointment. I took a lot of pics but here's just a couple. She has the stickers from the EKG on her fingers in the first...she finds something creative to do with them every time we go. Usually she makes a person out of them but we did nails this day. I got mine done to, blue is back. The next pic is her and Dr. Kanakriyeh. It was a good appointment. A lot of things he said to me were hard to hear. It was like I was hearing them for the first time. I think that we hear things when we are ready to handle them. When you have a child born with disabilities you put up a defense and I've had a lot of denial. I've always look at Emma's heart problem as something that can be fixed. I've always been looking for the solution, thinking after we get through this it will be normal. I had a hard reality hit sitting in that office. It was like they were telling me for the first time that my daughter was disabled. All this time I looked at her broken heart like a broken leg...it just needed time to heal. Fix this, fix that and everything will be normal again. What a wake up call. I asked alot of questions about the future. I believe without any doubt that if Heavenly Father wanted her heart to be healed it would be healed in an instant. I know that my prayers are heard and answered. I also know that Heavenly Father gives us trials and sometimes we have to live with them our whole lives. Whatever Emma's future hold I know it's in the Lords hands and I've let go of trying to fix it. Sooooo....I don't think I've really come out and said the results of her angiogram. They weren't a cut and dry answer and it wasn't the answer that I wanted so I've been a little stubborn and even angry. I've repented and know that this is going to be a long journey and I've got to stop putting life on hold until it's fixed. They don't think she is ready for the fontan surgery. I've done a lot of research on this since and can see why. She is doing so much better then she was. I know they were shocked that she has improved as much as she has. I think a lot of the doctors had decided that she wasn't going to ever get the surgery, she would have to have the transplant. So the good news is they are looking at her again. Everything looks good except for her leak. It's the main thing that is holding her back from getting it so they are considering going in and trying to fix the leak. If they can fix it and everything else holds strong then she should be able to have it in the furture. She is doing so well that there is not as big of a rush to get it done. She could go years the way that she is. The medication and lack of oxygen will wear on her but she will be ok. Eventually even if she does get the Fontan surgery she will have to have a heart transplant. That was my big shocker but I know Emma could prove anyone wrong, just ask her. They are going to do a test within the next month so see if they can fix the leak and then she will probably be having a surgery this summer to fix it. She's amazing how she handles all of this and how she handles her disadvantages everyday. I'm so grateful I have her in our lives, she gives me strength everyday.

God is in the Details.

I've seen some really big miracles in Emma's life. I've watched her go from near death to full of life overnight when they didn't think she would make it. It's easy to see God's hand in these things when they are so big but lately it's been the little things that have touched my heart. Mykaila's sweet teacher Mrs. Noss sent a gift home for Emma with a note that said, 'This is just a little something to brighten your day!" It made me think about how kind everyone has been through all of this. It seem like whenever we need something, someone is there for us. The day Emma's Cath was cancelled a phone call from Becky and Suzy changed my whole attitude about it(how did they know when to call, I was so discouraged), a gift for Emma from Amy and Emily on the way to the hospital which made the transition into the hospital easier(how did they know she would need that to make her feel comfortable) and then this sweet gift which kept Emma to stay in bed and play when she would have much rather been outside playing. There are so many thoughtful jestures I couldn't write them all down but wow we are blessed. I just feel like my prayers are so often answered by those around me. It's the little things that really make me pause and realize that God is in the details of our lives. He know us so well that he promts others to answers our prayers even when it may not seem that important to others, He knows it is to us which makes those that listen his angels. Thanks to all my angels. These are pictures of Emma with her gift from Mrs. Noss. She couldn't have picked a better present for her. Her favorite princess is Cinderella and she actually wanted to get this exact set for her birthday but things were a little tight(how did she know). Isn't it amazing how those around us can be so inspired. I also could write a novel on the how everytime she is in the hospital the timing of everything is so perfect. It always seems that the right doctor or nurse is in the right place at the right time. I don't see how anyone could not think that there is a greater power directing our lives. There is no way that we are here by chance, we are here by design. I've been so lucky to be put in situations that prove we are watched over and guided by God.

Back Home and doing good!

Emma's stay at the hospital went so extremely well. We were so blessed. Dr. Kanakriyeh did the angiogram and said that everything went really well. Without getting our hopes up he said her pressures look good and even her leaked look repairable. The other head surgeon at Loma Linda, Dr Bailey looked at her ECO after the angio and said he thought they should do it so we have two on our side. Dr K will present her in a conference next week with a board of specialist and they will decide if her heart is strong enough to do the surgery. I'm so excited at even the possibility. I know it's going to be a long week waiting to see what they decide but I really feel like she's headed in that direction no matter what. I'm so proud of her and how she handled everything. It broke my heart when I could tell she wanted to yell and scream no and would hold back with only a few tears and quiet request for them to stop. She is sooo brave. Everyone fell in love with her and so many remembered her and said you don't forget kids like Emma. She's now home and recovering. She's very tired and we just have to take it easy for a week as to not disturb the clotting of one of the main arteries they used as entry for the angio. She's getting back to herself. I forgot the memory card with the camera so we don't have any good pic in the hospital but here's some cute one's of her recovering in our bed. She's still a little swollen from the procedure.

Bags are Packed, Were ready to go!

Emma's really excited about her sleepover at the hospital. I don't know how excited she'll be when she gets that first poke but we have lots of things to make it fun while were there. I think it will be easier now she's older in some ways and harder in others. I'm just so grateful that she gets to have it now. She's going to be admitted into the hospital today at 3:00pm and be kept overnight for hydration. The angiogram is schedualed for 10:30am tomorrow the 6th. He will meet with us after and let us know how he feels but we won't know if they will do the surgery until after he presents her case at the hospital. He will do that either next Wed or the next and then they will let us know. I'll update on here as often as I can. Thanks so much for all the love and prayers and support and to everyone that is helping with the kids so Matt and I can both be there. They won't let any visitors come because of the flu that's going around but hopefully she'll only be there over night. Love to all.

Update

Emma had an appointment Monday...I was waiting to post because they were still figuring some things out but I couldn't wait any longer. They were able to get her worked into the hospital next week. Yeah!!!! I was so excited that we wouldn't have to wait for a whole other month or so. I really feel like she's ready for this. The Lord gives us tender mercies to lighten our hearts. I've had some really neat experiences over the last few weeks that have given me comfort and helped me to know that the Lord has His hands in all of this. There have been so many blessings coming our way. I'm really grateful it was postponed because we've been able to get a lot done to prepare for it. Also, I would like everyone to join us for a special prayer and fast tomorrow May 3. We are fasting that her heart will be strengthened and her valve will get stronger so when they do the angiogram it will show that her heart is strong enough for the surgery. I know that Heavenly Father has a plan for her and I'm just grateful to be apart of that. She's had a really great week. Thanks so much for keeping her in your thoughts and prayers.