We Have A Date

 Marlee had a follow up appointment with the neurologists this past Friday and when they weighed her, she was 12lbs and 7ozs!! I couldn't believe it. I am so thankful she is gaining some weight! She can still wear 3-6 months clothes but she will get there!!! The neurologists was pleased with Marlee's muscle tone but did tell us that she may always have low muscle tone (hypotonia) due to the DiGeorge Syndrome. She also has a 25% or greater chance to have a seizure. So, that is something else we will have to watch for.  She will roll all over the floor and can sit up with help but not sitting on her own completely, but we are working on it!!

 I finally heard from the surgeons office this past Friday.  This coming Thursday, August 1st, Marlee will have her vascular ring surgery at Children's Hospital.  David and I are already so nervous. It is a relatively low risk surgery with success but it's always easier to say low risk when talking about someone else's child.  To you, it is high risk.

At this point, they will not have to open up her chest. They will make an incision on her right upper side and cut the ring.  I have been told that it could possibly be a 5-7 day stay in the hospital but hopefully all will go well and she will be able to come home in 2-3 days. I will be staying with her at night while David is home taking care of the other kids.

I'm so ready for her to be ok.  At times, I ask why.  Why is she going to have to go through all of this? Why her? At times, I burst into tears.  Sometimes I just don't know what to think.  I tell you what though, she is the sweetest baby! I am so very thankful that she is in my life. Because of the DiGeorge Syndrome, we will forever be opened up to a world of things that we never would have thought, but God made Marlee just the way she is......and that makes her so very precious in His sight!

I am truly honored and blessed to be her mom. She has my heart tightly wrapped around that little finger!

 

 

Thank you for your continual prayers!

Love, 

~A

Change of Plans

I wanted to give an update on what's going on with Marlee. She is doing great! So sweet and precious! I have really been feeling blessed the last few days. Blessed that she is in my life and that I get to be her mom. My heart is so full!

Tuesday, we met with the GI Dr and his nutritionist.  They were both very well pleased with her weight gain and have allowed us to go up on her bottle ounces!

I also heard from the cardiologist yesterday. He met with his surgical team which consisted of other pediatric cardiologists and heart surgeons and they all agreed that Marlee needed to have surgery for the vascular ring. They also said they felt like the surgery (Supraglottoplasty) that was scheduled for this coming Monday, July 8th, should be cancelled.  Sometimes with vascular ring patients, the vascular ring surgery will help to clear up the Laryngomalacia.  They are hoping that will be the case with Marlee. So, I should hear from the cardiologist office this coming up week to schedule the new surgery.

Thank you so much for each of you that continue to keep Marlee in your prayers! Thank you for praying for guidance and wisdom for the Dr's involved in her care.  Love you all!

Love,

~A

Check Up and More Good News

This past Friday, I took Marlee for her 6 month checkup.  This little bundle of sweetness now weighs 11lbs and 7ozs and is 24 inches long!  I'm so excited that she is finally gaining some weight. She is still not where she should be for a 6 month old but she's getting there. I do believe we are going to have to go up to a size 2 diaper! The 1's are getting a little too small. :) That makes this momma's heart happy! 

We also got the results from the lab work she had done last Monday.  With DiGeorge Syndrome, patients can have low levels of calcium and high levels of phosphorus in the blood.  They can also have issues regarding the maturing of T-Cells and poor immune function. Praise the Lord, all of her blood work came back normal which is HUGE! I don't know if it could change in the future, but for right now.....I'll take it!

As of now, she is scheduled to have surgery for next Monday. I do know that the cardiologists is wanting to talk to the ENT so we are just waiting to find out if they will still do the surgery or post pone it.  Please pray for guidance and wisdom between the coordination of the two Drs.  I don't want Marlee going through anything that she doesn't need to go through.

I recently started introducing some solid food to Marlee. So far, she has tried rice cereal, peas and carrots and seems to like all of them!

I love this pic!! Love the way Marlee is looking at me! Sweet little Eli loves Marlee and couldn't wait to hold her!

Precious!!

 Getting big!

She's looking at me like "Momma....seriously?" LOL!

There's that sweet smile!! :)

Yesterday I was able to attend the 43rd birthday celebration of my home church that I grew up in and the church that my mom and brother and his family still attend.  It was so good seeing old friends and meeting new people who have been praying for Marlee. 

I can't thank each and every one of you enough for your continual prayers!! We appreciate it more than you know!!

Love,

~A