Happy 3rd Birthday Leah! Leah has done amazingly well over the last 6 months. We are looking at doing muscle closure sometime in January.

I know it's been awhile since we've done an update on Leah but here is a little info on how she is doing. She has adjusted well to being back home and continues to get stronger. Looking at her, you can't tell that anything happened a couple of months ago. Because of her muscle wall not being closed, she does have a belly that sticks out, but it doesn't seem to bother her in anyway. She does an amazing job of taking her medications and often times wants to do them herself. We had an appointment in Pittsburgh on Thursday and they are very pleased with her progress. We do not need to head back to Pittsuburgh until we schedule muscle closure for her. They are talking about doing the closure in January. We will be in Pittsburgh for about 2 weeks to have the surgery done. They said that this can be a very painful surgery. Thank you for your continued prayers and support. We are truly blessed.

We have arrived safely at home! We left Pittsburgh yesterday afternoon and arrived home last night. Leah was very excited about sleeping in her own bed again (so was her mom). We can't thank you enough for your prayers, encouraging emails, cards, gifts adn visits over the last 7 weeks. It has been quite a journey, but we enjoy having Leah's personality back. We will not need to be back in Pittsburgh until the end of April or beginning of May for a clinic appointment. We will go to a lab that is local to continue her blood work. Sometime toward the end of summer, we will look into getting Leah's muscles reattached. This will be about a 2 week stay in Pittsburgh. We praise God for bringing us through this journey.

This week didn't turn out quite the way we were hoping. On Monday, Leah's prograf level was about 3 times what it should be (prograf is her anti-rejection medication). Because of this, they wanted to retest it today and see where it's at. It was much better, but still a little high, so they would like to do blood work on Thursday again, to make sure she's at a safe level before releasing us. It sounds like we will most likely get to go home on Thursday. Despite all of this, we are very happy with Leah's progress. Everyday she seems more like herself.

If all goes well with Leah's appointment tomorrow and her liver levels are good, we will be coming home. We will need to wait on the results of her levels before we get the ok to head out. We are looking forward to being back at our house again but not looking forward to packing up all the things that have accumulated over the last 7 weeks. We will keep you updated:)

We had good news today. Leah's CMV and EBV virus came back negative. We were very happy to hear this. They are also continuing to cut more of her medications. She is still on a lot, but it has gotten much better over the last week. We are being told that we might be able to head home this coming Monday after clinic. Yea!! We will probably find out on Thursday if that is the plan. This coming Tuesday will be 7 weeks that Leah and I have been out here. I think we are both ready to be back home. Travis continues to travel back and forth. He works for 3 days, then travels out on Thursdays. This week, Ethan is staying with me and it has been going well. Leah enjoys having her older brother here to play with. She is doing really well with eating and doesn't seem to mind textures. We are still working on her transitioning to regular milk, but she is slowing getting used to the taste. We are very happy with how the last couple of weeks have gone. Thanks to everyone for your continued prayers and support.

Leah continues to do well. Her liver numbers look really good. She had another clinic appointment on Thursday and had more of her staples and stitches removed. I think she will have the rest removed on Monday. No word yet on how long we will be out here yet. We are hoping just another week or 2. We are grateful to continue to see more of her personality come out since we've been out of the hospital. One thing they are still keeping an eye on is CMV and EBV. She is at a little bit of a higher risk to get one of these because her donor was positive and she was negative. So far, it has not been detected. Monday they will do another test to see where she's at. If she would be positive for either one of these, it could mean a longer stay for us. Thank you all for your continue prayer, support and interest in Leah's story.

We are enjoying being at Ronald McDonald house. We had a very good weekend and even had our first outing to Target to get a few things. We also had some visitors here on Friday and Saturday. Thanks for taking out time to stop in. It's always nice to see some familiar faces. Leah had her first clinic appointment today. She didn't even cry when they had to prick her twice to get blood work. Everything continues to look good. We have another appointment on Thursday and they will probably take out the rest of her stitches and staples.

We are together again as a family in our temporary housing. Leah was released from the hospital today. We praise God for how far she has come in just a weeks time. We will be here for a couple of weeks yet. We have clinic appointments every Monday and Thursday to see how Leah's liver numbers are holding up. We have quite a few meds that she also has to take throughout the day but this will only last a few months. I never thought I would know the name of so many meds. Happy Valentines Day

Leah continues to get stronger. Travis and Ethan headed home on Sunday, and Travis's parents are here to help out for a couple of days. The nurses are starting to teach me how to do all the medications that Leah will be on when we leave the hospital. I also have a couple of teaching sessions on what all the meds. are for. They are looking at possibly releasing us from the hospital sometime this week. We will then be living at Ronald McDonald house for a couple of weeks and doing different appointments throughout the day. I wasn't expecting to hear that we might be leaving the hospital this week, but we are excited about the possibility. Leah still isn't eating a whole lot, but we know that will get better eventually. We can usually get her to smile pretty easily, which I love to see. We praise God for how far she has come in just a weeks time.

It's been a long 3 1/2 weeks but we finally got to see some of Leah's fun loving personality come back. Matt & Shelby came out to visit and Leah was even smiling for Matt. She also ate breakfast and supper on her own(without us practically forcing it into her mouth). And for the first time ever, chocolate cake with peanut butter icing. Please pray that she would continue to get better, and for her eating and drinking. Thank you all. Neither this girl nor her parents sinned, but this happened so that the work of God might be displayed in her life. John 9:3 *paraphrased

Our superheroes where glad to be back together

We weren't sure how today would hold out for us. Yesterday Leah's liver numbers went up again, so they scheduled a biopsy this morning if they didn't come back down overnight. Praise God, her numbers came back down, so we didn't have to go through another biopsy. The Dr's. also gave us a pass to spend a few hours at Ronald McDonald house together. It was so nice to get out of the hospital for a while. Leah is still taking it slow. She walks and plays some, but we are having a hard time wanting her to eat. We are trying all kinds of food, to get her interested again. Thanks for your continued prayers,

It's been a good 24 hours. We were moved back to 7B last night and Leah had one of the best nights of sleep since she's been here. Her diet restrictions were lifted around noon. We ordered pizza for lunch and mac & cheese for dinner. She didn't eat much, but seemed to enjoy what she had. Her throat is still raw from all the times of being intubated. She loves to drink ice cold water. She also walked for the first time since surgery and did very well. Physical therapy is working with her every day. We are pleased with her progress in just the last 24 hours. God is good

It's been an up and down kind of two days. We were happy to be moved to 7B on Saturday night, but sad to be moved down to the PICU on Sunday night again. Leah's hemoglobin had dropped, so they gave her a blood transfusion, but discovered her hemoglobin numbers had dropped again despite the transfusion. She threw up once and they thought it looked like old blood in that. She was also having a lot of bowl moments throughout the day. Because she had lost so much blood, they decided to put her back into the PICU to keep her stable.They also gave her another transfusion. She did really well through the night with no more incidents. This morning they did a Esophagogastroduodenoscopy, where they take a scope down through the mouth into the stomach to see if there's any bleeding. They determined that she has gastritis. This can be caused by so many different medications and also the stress on the body going through surgery. We were just glad it wasn't an ulcer. She has been able to keep water down but continues to have some loose BM's. We were given the ok to head back to 7B, but they do not have a room for us at the time. We are hoping for one soon. I was glad to have my parents here through this whole episode. Travis left Sunday morning and will be coming back out either Wednesday or Thursday with Ethan. We know that God is complete control of Leah's situation and we continue to trust in him through all the ups and downs.

Great news, Leah was moved to 7B, the transplant floor. We are excited to be here. It feels like we were in the PICU forever. We are in room 724. Continue to pray for Leah's liver numbers. She is on a steroid to help with rejection. They did an ultra sound today, to make sure everything looked good. We haven't heard the results yet. We are assuming they are good because they cleared her to start eating. Thanks for all the encouraging words and prayers. They are felt.

Yesterday was not quite the news we were hoping for. Leah's liver numbers had gone up again, so they needed to do a liver biopsy. They decided that since they were doing the biopsy, they were also going to drain some fluid around the right lung. They did intubate again, but were able to extubate as soon as the procedure was finished. We were glad for that. Her results from the biopsy showed that there is rejection. This is not uncommon. They will treat her with steroids to stay ahead of it. She started her first dose today. As far as the lungs, not a lot has changed. Her x-rays are still showing that the right lung is still collapsed in the lower part. She does great when not on the bi-pap machine. Her oxygen levels are very good. They decided to put her on a high flow cannula instead, to see if she can work at getting her lung to open. They did an ultra sound today, but we still haven't heard if they know why her right lung is taking so long to heal. They did remove some fluid yesterday, but not as much as they thought. We are glad to see that she doesn't have to wear the bi-pap machine anymore. She was not very happy with it. We are still in the PICU, but as soon as her lung looks better, they plan to move us. We are able to hold her a few times throughout the day, which we enjoy. She also has PT and OT once a day. Today they had a dog visit and also someone who does music therapy. We know we are on the road to recovery, but some days seem long when we don't see a lot of change. Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus. -I Thess 5:16-18

We had an overall good day. Things are still moving slowly with Leah's right lung. Her xray showed that there wasn't a whole lot of improvement through the night even though she was wearing the bi-pap machine. She was able to have 2 breaks throughout the day from wearing it. Both times she was off the bi-pap, her oxygen and heart rate were excellent. She wasn't on any kind of oxygen to support her. They are also doing something called cough assist. They force air into her to make her cough out the mucus. She is not a fan. It takes 3 of us to hold her down, and one person to do the cough assist. We know she has some fight left in her:) Our 2 prayer request would be that we would see a big difference in her xray tomorrow, so that she could have longer periods without the bi-pap machine. Also her liver numbers were a bit elevated, so if they don't drop by tomorrow, she will need a liver biopsy. If they do a biopsy, she will most likely need to be intubated again. It would only be for the biopsy, but we know her throat is soar from all the other times. It would be nice to give her a break from the breathing tube more than 2 days. Thanks for you prayers.

Leah did really well through the night. They were able to do some suctioning to remove more of the mucus. Her x-ray look great this morning. The goal for tomorrow is to hopefully remove the ventilator. Her liver numbers were a little high, but this is about the time the body starts wanting to reject the liver, so this is very normal. She started some steroids to help. Over all, we felt like today went better even though she has the breathing tube in. She is very good at trying to get her hands up to her mouth. We have to keep her strapped down. She manages to slid herself down and get her hands closer to her mouth. Many times throughout the day, we have to move her back towards the top of the bed. She's feisty:)

It's been an up and down kind of two days. Yesterday, we were both able to hold Leah dispite all the wires and tubes. She seemed more like herself. We could hear that she seemed to have some mucus in her lungs, so we were trying to get her to cough it up. Because of her incision on her belly, she wasn't able to cough hard enough to get anything out. She slept with a C-Pap machine to see if that would help with her collapsed lung. This morning the xray showed no improvement. They decided to insert the breathing tube again and do another bronc. on her. They were able to get out a lot of mucus. Both lungs look irritated, so they aren't sure if she has a viral infection. We should know by tomorrow. She will keep the breathing tube in through the night and they will see what her xray shows tomorrow. We are praying for clear lungs. She really doesn't like the breathing tube and tries anyway to get to it. Ethan came out with grandpa and grandma Sauder, so we are enjoying having him with us. We have decided to not let him see Leah until she is moved to a regular room. We are hoping that this happens before he has to head back home. He brought some gifts out that he wants to give to her. Thanks for all the prayers, cards and support through this time. .... "In this world you will have trouble. But take heart! I have overcome the world. " -John 16:33

Leah is definitely looking much better today, but her right lung is collapsed again. They are going to do an ultrasound to make sure it's not fluid around the lung. But as for now she has to wear a mask from a CPAP machine, which she absolutely hates. And because of this we will be spending another day in the PICU. Setbacks can be very discouraging, but it's all in Gods timing.

I never thought I'd be happy to hear my baby girl cry, but after almost a week of silence a raspy cry is music to my heart. Yes, praise God Leah had her breathing tube taken out today around 4:30pm. You can tell that her throat must be very painful. But we are very excited to be moving forward with Leah's progress. The transplant team will see her tomorrow and decide if she should be in the PICU for another day or not. Words can not express to you all how thankful we are and how blessed we feel for all of you and your support (prayers, cards, etc.) While I don't wish anyone to have to go through this, my prayer is that you all could experience God in the same way we have through all of this journey. And that God would bless you as much as you have blessed us. Thank you so much. Please pray for Leah's throat and lungs as she recovers from her breathing tube being taken out.

Leah had an OK day today. The word of the day was lungs. She had another bronc done today. Her x-rays look good now, so they hope to ween her off the ventilator and pull out the breathing tube. Hopefully that can happen tomorrow. She responds some by shrugging her shoulders and shaking her head. My (Travis) parents were out today. We would just ask for continued pray for healing over her body, and for Gods peace, comfort and strength.

I thought I would take a moment while Leah is resting to update you on her status. Leah's incision was closed at about 10:30 this morning. She had a good ultra sound after they closed her up. They were only able to close the skin, so we will have to be back in about 6 months for her muscles to be reattached. At 4, they stopped the medication to keep her asleep. Slowly she started to move and open her eyes. It was so good to see her eyes again. She still has the ventilator. They are slowly weening her off of that. Over all we feel very happy with how the day went. Travis's parents will be with us tonight into tomorrow. We feel so blessed by all the prayers and support from family and friends. Thank you.

Pre-surgery photos. Can't wait to see her like this again.

 

Today was on ok day. Leah had a collapsed lung, so they did a bronchoscopy (scoping of the lung) to see what the cause was. They were able to remove some mucus. We hope to find out tomorrow that the results of tonight's xrays are better. Leah's ultra sound was good again. Her liver is functioning the way it should. They are looking at possibly closing her incision tomorrow.

Leah had an overall good day. She had 2 ultra sounds, one this morning and one this afternoon. Results were good for both. She continues to be sedated, but they are looking at possibly closing her incision tomorrow. They will see were the swelling is and make the decision from there. I was able to watch them open her bandages today and see what her incision looks like.

Her heart rate seems to go up when we speak to her. Her medication was started to wear off while Travis was reading to her and she started wiggling around and lifting her arms. They quickly gave her more medication to keep her still b/c of her open incision.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Leah went back to the OR this morning because they discovered what they thought was a blood clot. When they reopened Leah, they discovered it was only a kinked artery. Praise God! They are leaving her incision open until some swelling goes down. As of now they are looking at closing it on Friday. This means she will be sedated until that time.

We realize there will be more ups and downs, but we know that prayer is very powerful.

We had a little bit of a set back this morning with Leah. They discovered a blood clot in her artery going to the bile duct. They took her back into surgery a little after 10am. It will take about 3 hours. This was harder on Travis and I then the first time she went into surgery.

Pray that when the do the surgery that they would be able to see that it's fine or that they would be able to open the artery back up.

Leah's Transplant

January 15 Leah received her new liver. We received a call on the afternoon of Jan. 14 and were told to head towards Pittsburgh that evening. We got out to Pittsburgh about 2 am. It didn't take long for them to start getting blood from Leah. They had some trouble finding a vein for her IV. Leah did amazing during the whole process of being poked in many places on her arms and hands. She didn't like having the splint her hand, but was so tired that she soon fell asleep.
At 8 am the Dr came in and told us that they were ready to take her to get prepped. By 9:30 am, we were saying good bye to a very sleepy girl. They had given her something in her IV to make her drowsy. Travis was able to go back with her until she was completely asleep.
We are continuing to trust in God through this whole process. It's been one of the longest days as we wait to be able to see her in the ICU. Only a couple more hours.
We will continue to keep you updated.

We are starting a new year still waiting for a new liver. I have always believed great leaders are not those who act on their own, but seek counsel and wisdom from those around them. The call is theirs to make. Along with the praise of success and blame of failer resting on their shoulders. We know that it's in Gods hands, and He cares more for Leah then we do, but He has entrusted her care to us and at times I wonder if we're making the right decisions. We are trusting in the wisdom and advise of the Doctors, parents and individuals who have gone before us.
And while Leah has been such a blessing to us in our lives, with a personality that lights up a room, MSUD at times feels like a curse.... But I'm not convinced.
The cross of Jesus seemed like a curse for 3 long days, but it has become what liberates us. So we wait on his timing.

Thoughts from Leah's Dad