Prayer Request


I know, I know…still no picture.  Thankfully, if you wanted a picture blog you would be visualizing on some other website.  Today is my birthday, so maybe we will get some photos tonight, though the pink highlights aren’t as bright as they were before.

Have you ever walked into a trap that triggered an event in your life that cuts deeply and you were surprised by your reaction?  I had that experience when I took Lydia to the dentist a week and a half ago.  The particular dentist’s office is pleasant enough, but when I brought my three preschoolers for their appointment, Lydia was refused to be seen.  I was accused by the hygientist of not getting them a letter stating that she could be treated.  I don’t know what sent me into a spiral.  I understand that the doctor wanted to cover her bases on risk to treat her.  Maybe it was the stress of knowing that Lydia had cavities or it was the accusation of being a bad parent.  I don’t know.  You try to do your best, but that isn’t good enough.

They saw her last week, and told me that she did indeed have cavities and would need to have one day surgery at Children’s  Hospital to take care of it.  The only problem is that she doesn’t do surgery during the summer.

Grandparents are very good friends with a pediatric dentist in town, who use to teach at the school of dentistry.  He gave me a call after speaking to the Grans and was so wonderful to give me all of his phone numbers and said that we were family.  He saw Lydia the next day and agreed that she needed surgery and that it would be done as soon as possible.  She will get 4 crowns on August 3.  She will be worked in earlier if anyone cancels.  They go to Children’s every week, but right now they are booked.

Ok, so I knew that her teeth would have a weird side effect of her previous treatment,  but here are the specifics:  She has feeding issues.  You may remember that she was fed via a blood line or through a feeding tube for about 8 months of her baby life.  When she was bottle fed, I could give her a bottle while she was asleep to keep her hydrated if she did not get enough during her waking time.  Even then, she would refuse a bottle of water while she was asleep, but except milk.  I finally gave up these feedings and now when she goes to clinic she is most often dehydrated.  So much so that I am to do what it takes to make the girl drink.  I only offer her apple juice, milk, and water.  I have just started freshly pressing apples to get pure apple juice without citric acid or any sugar or anything to not hurt her teeth.    I am my wit’s end balancing how to take care of her fluid intake and her teeth.

In addition to all of this, she has GERD (acid reflux).  This too rots teeth.  The good news is that her enamel is growing normally!!!  That was a scare.  When she is put under she will get her first set of x-rays on her teeth.  I am hopeful that she has some adult tooth buds forming.  Because she had Total Body Irradiation so early in life they might not form…but there is HOPE.

Thank you for letting me share my frustration and prayer requests with you.  I am in a really good place, resting in the one day at a time aspect of life.  God gives peace thankfully.

 

Please be in prayer for the Pierce family.  Their precious son Bennie passed away yesterday after a 2 year fight with cancer.  He was 13.  He and Lydia were diagnosed around the same time.  His family is celebrating his life on earth and in heaven.  If you would like to leave them a message of love and encouragement please sign their guestbook on their website.  My heart is heavy for their loss.

This has been a very hard week for Birmingham’s children’s cancer world. We have mourned the loss of two beautiful children and ache for their families. Please continue to keep the Brittains and the Beams in your prayers, as well as the doctors, nurses, and staff that serve the oncology patients at Children’s Hospital. Please pray for all of the families left fighting with their children. It is so hard to watch them go.

With all going on, I am not at a place to write “part 2” yet. It will come…hopefully quickly. But I needed to make you aware of Lydia’s Ear surgery tomorrow morning at Children’s. It is just for tubes and an ABR (hearing test). It should be a quick uneventful procedure. That is my prayer!

I will post when she is out. Thanks for your faithfulness to pray.

I found out, within 5 minutes, that we have been exposed to both MRSA and pneumonia!  Dr. Cook is in contact with disease control to decide if we need to do anything special for Lydia preventively.  I was exposed to MRSA by my sweet grandmother.  So she needs lots of prayers.  We are not sure where in the world Sally contracted pneumonia.  She did not return to the house after finding out to keep Lydia from anymore exposure.

Baby Sarah’s surgery went great!  She is recovering in the ICU, which was mandatory.  Hopefully, as they monitor her she will continue to improve quickly and by tomorrow night (Thursday) she will be in a normal hospital room.  Her parents and extended family are doing well too and very relieved!

We are enjoying our vacation in sunny Florida.  We miss David so much though!  I am glad that he is getting a vacation at the house though.  It is much deserved. 

When we got here, I let the boys put their feet in the swimming pool.  This was so much fun that they became soaking wet.  So the rest of the day, they were stripped down to their skivvies playing outside with a shovel and pail.  It was too cute.

My younger son (2 1/2 years old) was so wired from the excitement that he fought sleep harder than ever.  He moved and squirmed until he fell asleep.  Whew, I didn’t think he would ever calm down.

Lydia and my eldest are having a great time too.  She was trying to chase him up the stairs.  She is getting more and more mobile. 

The kids and I are all in one room.  I am hoping that we can get a good nights sleep.  I will let you know how that goes soon!

Baby Sarah’s open heart surgery has been delayed until Wednesday morning, March 18, first thing.  She was without food or water all morning today thinking that she would still be able to go to surgery at some point.  When they were told of the delay they allowed her to eat and she scarfed her bottle down!

She will be without food or water starting at midnight tonight…then she will get two shots in the middle of the night.  Add this to only being three months old equals one unhappy baby.  Please pray that she is comforted during the night and that it is much smoother than anticipated.  She should go into surgery first thing in the morning then straight to the ICU.

I have been quite emotional about the whole thing.  Today, I freaked out because they had an extraordinary time getting an IV.  Actually she doesn’t even have one for the time being, because of the struggle finding a vein, then it blowing.  I have felt the guilt of the world, because I didn’t prepare them with our experiences of IV nightmares and ways to bypass them.  This is their story, not ours, but we share both stories because we are walking them together.  One family.  I called them this evening in a panic (exactly what they needed, right?) trying to fix the problem.  I know I can’t keep Sarah from her story, but I wish it was an easier story.

Many people have asked how baby Sarah is related to us.  She is Aunt Kay’s grandbaby.  Kay is David’s aunt.  Kay went out to visit us in Seattle and has been a faithful supporter of Lydia.  Kim is her daughter, David’s cousin.  Which makes Sarah, Lydia’s second cousin.  Woo…that’s a lot of info!  Did you catch all of that?

As far as Lydia is concerned, we hit another huge milestone: as of today, she is fully weaned from her Tacrolimus!!!  This is her main medication that helps her bone marrow from rejecting her body.  It is an immune suppressant also.   So far, so good.  She will have a month of not messing with her drugs, then we will start the wean of her last rejection/immune suppressant drug.

Things are going so well that Sally and I are taking the kids on vacation to my moms in Florida for the rest of the week.  This will be our first vacation since Lydia’s birth.  David will have his own vacation here at home.  He has to hold down the fort.  He took so much time off to go to Seattle, that he is staying and having a vacation from daddy responsibility.  He will miss us like crazy, but I am glad that he will be able to sleep in a bit, read a book, maybe even enjoy the great outdoors!

Thank you so much for the outpouring of love and support for our babies.  Your warm wishes are treasured.

So last night was a scream. Literally. David had asked the boys to go to the bedroom to get ready for bed, I dunno, a half dozen times. They kept getting distracted and they talk so blame loud, I don’t know if they even heard him. Well they ignored him, until he raised his voice.

All of a sudden a parade of children were marching back to the bedroom, swiftly I might add. In the parade was Lydia crawling as fast as she could keeping up with brothers. You could tell SHE didn’t want to get in trouble either. It was adorable.

My younger son, is very thoughtful. He always brings brother his sippy cup when he goes and gets his. Now, he always finds a doll for Lydia to play with. The two of them sit side by side in the van. I often find them holding hands. It is so precious to see that she has made into the kid club.

We got out a bit this afternoon to visit our sweet cousin Sarah. Sarah is only three months old and will have open heart surgery on St. Patty’s Day (Tuesday, March 17). She looked great. She is beautiful with lots of personality. You would never know she had any problems. She was diagnosed with Tetralogy of Fallot, which is a congenital heart defect, when she was first born by our pediatrician. I can’t imagine what he was thinking when he found this heart defect on another member of our family.

Anyway, Sarah will be admitted to UAB on Monday and have surgery on Tuesday. She is expected to be in the ICU for a day or two minimum and a total of five days inpatient minimum. This surgery will include repairing a hole in her heart. It is expected to be the only surgery that she will need, with no heart problems in the future. Please cry out to God on Sarah’s behalf. Her parents, Kim and Will, are doing very well, but need prayer as well.

Baby Sarah - Our Cousin

Baby Sarah - Our Cousin

Baby Sarah does not have a website, but if you would like to post a message, prayer, or words of encouragement here, please do. Mama’s like to know that people care for the health of their children.

Thank you,

Liz

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