No news is good news

     Lydia has been doing so well that we are feeling that life is getting back to normal (ish).  She is now crawling quite often instead of just scooting on her bum.  She occasionally pulls herself up to standing.  She is saying more sounds that are her attempt at words.  She is swallowing more food and spitting it out less.  She is happy and spunky.  She knows what she wants and lets us know what it is one way or the other (points with grunts or throws a fit if she doesn't get it).  It is fun to watch her be so excited about life and see her strong personality now that she feels better.
     Our family moved up to live at my parents house for a couple of months while we re-do our home.  We intended to fix it up shortly after we moved in but it got put on hold as our "normal" life came to a screetching halt as we concentrated on Lydia's health.  My parents have been very gracious and hospitable.  My kids love being up here.  It kind-of feels like a long vacation. 
     Brian's been working hard most evenings and Saturday's to get our home done.  He's a hard worker!  I'm grateful for all that he does for our family.
     Spencer and Alyssa went on a week-long camping trip with some cousins from the Christiansen side.  They had a great time shooting bows and guns, swimming, hiking, doing  a service project and doing many other fun camping activities.  We were grateful that they were able to go since our vacation plan this year was zilch-o. 
     We are looking forward to enjoying many more healthy, happy summer days.

(Our camera takes terrible pictures so I don't know whether to include them or not, but here are some anyway.)

Tender Mercies

Yesterday was the three month anniverary of Lydia's liver transplant.  We have had such a huge tender mercy from Heavenly Father that she has stayed healthy enough to stay out of the hospital up to this point!  Now if she goes back in the hospital she will be covered under our regular insurance coverage instead of the 500K maximum allowed for her transplant and three months post-transplant.  With her transplant complications and extended hospital stay she neared the top of that maximum.  I really thought she would be in before now with how often she was admitted before the transplant and the rough go she had with her transplant.   
Thank you Dr. Book, Dr. Scaife, Corrinne and all of the excellent medical staff at Primary Children's Medical Center who have worked so hard for Lydia.  We are so grateful for your knowledge, your skills and your caring that you have given to heal our Lyds!!  We are especially thankful to our Heavenly Father for the countless blessings He has blessed Lydia and our family with!!!

Almost There

Our insurance problems are over with on July 8th. It has been hard to not take Lydia out places because of this fear of getting stuck with a large bill. It has been a blessing at how healthy she has been. That makes us want to take her out, but we don't want her to get sick and end up at the hospital. I dread the day she has to go back to the hospital. I know that she will have to some day. It is just the nature of the beast.
It has been a relief having the transplant done. I must say though that it still take a long time to care for her. It gets better and better each day. She is just starting to crawl. She has been scooting around funny for a while. This makes her able to entertain herself so much more. She loves to just scoot down the hall and go into the kids rooms to find fun things to play with.
We took her to church today for the first time since the transplant. It was so nice to finally be there all together as a family. I must say she was the nosiest kid in sacrament meeting.
The amount of doctor visits and medicine are slowly decreasing. We started therapy for her eating disorder. Hopefully we can really get down to business with the next visit. She chews up everything we give her. She still will only swallow water. We think that she is swallowing some things more and more but it is really hard to say with how much she spits up. One day she will get it down. Since everything that has happened to her seems to be slow I am just going to mentally deposit in my brain that this will take a long time also. It makes me less frustrated when I do that.

Happy girl

We took Lydia to see her grandpa's on Father's Day.  She really loves both of her grandpa's a lot.  She loves them to hold her and play with her.  I love to watch them interact with her.  She has mostly been homebound because of her immunosuppression, but we felt she was pretty safe on Sun. because one get-together was outside and there were no extra people at the other grandpa's.  In a couple of weeks she will be 3 months post-transplant which means we will be past our insurance transplant max so we won't have to worry so much about money if she gets hospitalized.  If she continues to do well, they will start weaning her immunosuppression meds about then also so we will feel somewhat safer taking her around others. 
We had another successful G.I. visit on Mon.  She cried less at her blood draw than in the previous weeks.  The phlebotomists were able to get the blood they needed in two pokes instead of three.  Dr. Book and the team were happy with how she is doing.  They needed to adjust her Prograf (anti-rejection med)  because that level was high.  They also changed her feeding schedule to try to get her hungry more so she will want to start drinking more than water and eventually learn to eat food.  It's been nice to have her disconnected from her food pack for chunks of time during the day so she can scoot around easier.  She is getting around faster and get frustrated when her food pack limits her range of motion.  She has been getting up on her hands and knees occasionally this week.  It is so exciting to see her get stronger and progress.
 I took her to Davis hospital last week to get her blood drawn.  I was nervous for this because we previously haven't had good experiences with blood labs other than PCMC for Lydia.  It went great though.  The phlebotomist was able to get all the blood with the first poke.  I will continue to take her there on the in-between weeks when she doesn't have an appointment down at PCMC.  This will be a big help to not have to go to S.L.C. each time.

It's been great to have the older kids home!  They have been great helplers with Lydia and other things.  Alyssa cleaned out the fridge for me the other day.  She volunteered to take Lydia on a walk this morning.  She seems happier to have a sister that she can play with and interact with more.  Spencer and Dallin also love to play with her and Lydia loves playing with all of them.

Lydia is continuing to do great!  She had a swallow test last week to see if she was still aspirating into her lungs.  She passed with flying colors.  Yeah!!  She is now free to have all the water that she wants.  We will start having early intervention come to teach her how to eat.  Her GI clinic visits are now every two weeks instead of every week. 

She gave us a little scare last week.  Brian was supporting her back as she was standing up to the coffee table.  Her legs gave way suddenly and she fell with one leg bent underneath her.  She cried hard for a while and woke up a couple of times in the night crying with pain.  In the morning, she cried if her leg was moved a certain way.  I was afraid she broke it or dislocated her hip.  I took her to get x-rays.  Gratefully it wasn't broken and has continued to get better over the past few days. 

Lydia loves to play with the kids, take walks in the stroller outside, watch the kids play outside, play in the tub and scoot around the house on her bum.  One day the kids were pulling her around the trampoline on a blanket.  She loved it and the have since pulled her around the house on a blanket.  She laughs and smiles almost all the time.  We're so happy that she is feeling so much better and that she is so happy. 

Fun at the Zoo

Lydia's Uncle Aaron and aunt Lyndee tended her on Friday evening while the rest of our family went to the zoo for "dreamnight".  When Lydia was in the hospital for her transplant, Primary Children's gave us tickets for this fun evening.  There was dinner, facepainting, kids zoo packets and mascots along with all the great animals to see.  We got a flat tire on the way, but Brian was quick to remedy this and taught the kids about tire changing.  He's a great teacher to them.  We all had a great time at the zoo.  It was kind of a trial run to see how Lydia would do with others.  Brian's work has a Lagoon day coming up at the end of the month that we are looking forward to and we wanted to leave her with someone.  She had been tended by both grandma's earlier in the week and did great, but she's used to them.  She surprisingly did great with Aaron and Lyndee too.  This means we can leave her more with others.

BYE BYE PIC-LINE

Our friend Nancy (home healthcare nurse) came and pulled Lydia's pic-line today (under Dr. Books orders, of coarse).  Lydia's anti-rejection meds have been stable enough to move to once a week labs instead of twice a week.  As much as I hate having her get poked for blood draws, I hate having her in the hospital for infection worse.  The pic-line is a source for risk of infection so we are happy it's gone, especially now that we have been out of the hospital for three full weeks tomorrow.  Lydia will also be glad to get to put her arm down into the bath water.  As soon as her incision wound is healed enough, she will be able to have a full-blown fun, splashy bath.  Her voice is getting much stronger and her oxygen levels have been much better so hopefully this means her lungs are continuing to heal.  She will have another swallow study test next week to see if she doesn't aspirate any more.  We have gotten several good blood pressures so the doctors have started to wean two of the blood pressure meds.  She seems to be doing great!
Spencer, Alyssa and Dallin have their last day of school tomorrow.  Me, Parker and Lydia will really enjoy having them home for the summer.  It will be more people for Parker and Lydia to play with, more help for me and less worrying about germs brought home from school (another big source for possible infection).  Welcome summer!!