Wednesday, May 6, 2015

The end is in sight...

Let your roots grow down into him and draw up nourishment from him.See the you go on growing in the Lord, and become strong and vigorous in the truth you were taught.Let you lives overflow with joy and thanksgiving for all He has done. Colossians 2:7

Looking back over the past year-I have so much gratitude...to everyone who supported us,to our families who listened and encouraged us,to our friends who did small and big things to keep up light,but mostly to God for carrying us through our hardest year yet.Today-today I am grateful,so very grateful,that Haydens treatment is done!!2 weeks ago we met with the infectious disease doctor and she wanted us to do 2 more weeks of treatment,those 2 weeks ended on Monday and let me just tell you the joy there was giving Hayden her LAST 3 and a half cc's of that awful tasting white stuff.But so far my mind hasn't forgot-10 am rolls around and I catch myself going to get the meds.:)I was worried that going off her meds after being on them for a year that she would go through withdraw...but so far I haven't noticed anything.And she seems to be doing really well!

Its funny-the one thing i've been telling my mom is that I just cant wait for our lives to feel back to normal...but then I wondered,am I even going to think about it when it is..but yesterday as I was sitting outside with the kids watching them play I remembered about a year ago-(granted Haydens neck looked awful at the time,but since the doctor we were seeing didn't seem to concerned we were trusting him ) and life was normal,we had no idea what was about to happen...but we were happy-and having a fun normal day..yesterday,kinda felt like that,i looked at Hayden and though,"shes healthy!!"Thank you Jesus!!

We have one more little hump:) Tuesday will be a big day for us,Hayden is meeting with both the surgeon and the infectious disease doctor. At the ID doctor we will just be doing kind of a final appointment and making sure that everything still looks normal since she is off her meds.We will also be talking about how many more appointments she will need to attend..i know I said this is the final one but kinda,not really:)Earlier she had mentioned that for a year after shes off her meds-she will still want to see her every 3-6 months just to make sure it doesn't return..i don't know if she still wants to do that or not since I know she was very happy with the length of time we did treatment . Then the surgeon...Haydens scar looks really good-its still very noticeable when her hair is up,but it looks really good considering it went from this
 to this

to this(taken today)
Where the big open hole once was,still kinda looks like a hole.especialyl certain ways she turns her head,it looks kinda crazy.but the surgeon has been soo hapy with how the scar looks and always says"she makes me look good" That being said-on this picture you cant see it so well-but on the front scar theres a little dot,that has been a scab,over the past 2 weeks it has looked the best its looked since surgery,but its still there-the Id doctors main concern on this is that it may be residual disease,if it is that, there is a POSSIBILITY (could happen,could not happen) that it could pop back up.The surgeon doesn't seem as concerned about it as the id doctor(who isn't crazy concerned either,but just does not want to see this come back in any way.Im with her on that:)) Out meeting with the surgeon on Tuesday will be to discuss doing a reconstructive surgery,where he would go in and make the scar look better and not so noticeable.We were thinking were not going to do that,however,the id doctor did say,if this is residual disease,then while he does the reconstructive surgery-he could also clean out any residual that was left in there,and the chances of this coming back are lessen IF he finds anything..so thinking that way,were feeling like we will do the surgery.But Im really eager to hear what he (the surgeon)has to say-last time we spoke he said she may not even need the reconstructive surgery-but we will wait till our may meeting to see how its looking.(If the scab is gone,we have nothing to worry about.)That is on Tuesday.hopefully that was understandable for everyone:) I will write again after Tuesday when we decide what well be doing.
Again THANK YOU for all your prayers over the past year and still-Looking back,I know we were carried!
 

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