This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.
So after letting me vent the other day I decided to try this neat way of blogging by talking about the hi's and lo's of the week. If you're an email subscriber, you may not get notification until Friday morning, so I guess we can just call it Hi Lo Thursday and Friday. (:Hi's
My daughter is taking a teakwondo test today and if she passes she will get a trophy for being halfway to black belt. You go girl!
My husband keeps hinting that he wants to buy me a new laptop. I'm wondering what he has up his sleeve. He keeps measuring my computer screen to see what size it is.
I got to meet with an old friend last Thursday who makes me laugh so hard. It's always good to have friends like that.
I am so blessed to have women at my church who have walked through many hi's and lo's with me and still love me unconditionally. They have prayed with me, cried with me and laughed with me. Where else do you find people like that?
Lo's
Aside from the obvious (Gabby's passing)...... I've been going to bed waaaaaay to late and paying for it!
I've been dreaming of a day without anyone in my home where I could just sit with the boy and watch the world go by. This week especially.
I admit, I'm getting a little stressed about this flu going around, especially with an immune compromised kid and my husband and daughter are flying to Texas next month...should I really be worried?
What was your hi and lo this week?
The past 3 days I have wanted to post, but I can't seem to find the words.....What can I say? I'm heartbroken for this family who lost their sweet baby. I know they will miss her greatly and I can't imagine what they are going through right now. I have been wondering myself... I haven't been to a memorial service since I was 18 years old...that was 15 years ago and now I've been to 2 in less than a month (one of our home nurses passed away in March) and I can't help but wonder what I'm supposed to learn from all of this? I'm asking God to help me understand. So many questions I'm asking myself and him.
So with all of this I have found myself being nicer to my nurses (for the most part) hee hee.... I mean, I have incredible nurses, but naturally there are minor frustrations here and there, but I never take any of them for granted. They are a part of my sons life and ours. Each and every one of them who step foot into our home become a part of our family. I am also finding myself not stressing out as much about Isaac's disabilities, but just being thankful that he is here. What more can I ask for? The milestone of him turning 2 was something I never thought he would live to let us tell about. And yes, I admit, I'm even trying to be nicer to my husband and daughter, which is easier said than done sometimes.(: Isaac's life has shown me time and time again how fragile life can be, but I'm realizing that more than ever now.
This week Isaac's 02 levels are great and we are taking him for a day trip out of town next weekend to see Grandpa Billy and the rest of the family....something we have never been brave enough to do, so this is a huge deal! He also got a dr's order yesterday to go into the therapy center soon to get fitted for a stander that we may be able to use in the home. This could help him in many ways, but especially for extending his legs.
Autumn and I walked the March Of Dimes on Saturday morning for a team for Michael McCallister, who was just over a pound when he was born. I had a great time, even though I was feeling sad about Gabby's passing. It felt good to exercise and to also know I was helping to promote awareness for babies so that they can be born healthy. When they announced that there were a few different colored leis you could wear to represent your child, I found myself walking proud with my lei that represented that I had a special needs child. It felt good!
Isaac's little friend passed away on April the 21st. She was a little sweetpea and will never be forgotten. Rest in peace sweet baby!
So the above photos are of Isaac in his new VW Bug swing and of him with his gorgeous Great Nana. If you look closely she has a tear in her eye as she is Sicilian and gets emotional easily, especially when she gets to hold her great grandson who she prays for everyday in her walk in closet. No kidding...if you can't find Nana anywhere, that's where she is!So June the first we see the ENT Doctor to talk about the next scope for Isaac to see if he might be ready to get decannulated (have the trach removed). Two months ago I didn't believe my ears when she said it was even a remote possibility. when she originally placed the trach we asked "how long?" She said anywhere from a year to the rest of his life. I figured we would be looking at a very very long time. So I'm still very guarded as I know how these things can go and it just may not be the right time yet. Having the trach removed would make life much easier for us as we could be more mobile with him and and he would be less fragile. He would also be at less risk for respiratory infection. On the other hand having it removed could potentially be risky and we could lose most, if not all of our help that we have had since Isaac was 4 months old. Isaac qualified for a program that would allow us home nursing due to his medical condition, but he mostly qualified due to the risk factor of having a trach. I didn't realize this until talking to a few parent's with fragile kids who do not get this kind of help in the home. Most of them are expected to learn to become medical professionals overnight without very much help. I have been writing to congress about this issue. If it were not for the caregivers and the support we had during Isaac's first year of life I would not have been able to keep my head above water.
A lady at the hospital who was planning Isaac's discharge even told me one time that there were no nurses in the entire city because of a nursing shortage. She then in the same breath recommended counseling. Right after that I called up the first agency I found and...... sure enough they were scheduling nurses for us within a week! What if I had taken her word for it? Why was I told that? Why did I have to find the resources myself? How many other people are not given the proper resources when going home with these precious children?
That's when I officially became a mother of a special needs child....when I learned that you never ever take no for an answer! So I'm praying for God's plan as I know his is perfect. If he has the trach removed it will be a celebration, but It will also be an adjustment for all of us.
Colleen
The sun is finally out and I can't wait until I can take this boy out into the world to enjoy the sights and smells! For his birthday I'm going to buy him a swing for our backyard swing set. I'm sure he will enjoy that.
A few people were praying for my Dad's surgery on his arm last week. He is doing real well, although he is going a little stir crazy as he won't be back to work until June the 1st. He's also eager to start golfing again (his favorite sport), but it will be awhile! We are looking forward to having them over the 18th to celebrate Isaac, my Grandpa and my Stepmother Jean's birthday as they are all in April.
Isaac got tested last week on his immunoglobulin levels. (yes it's a mouthful, click on it to see web MD). It is low and in fact lower than when they tested him at only 7 months old, which doesn't make much sense at all! I'm not going to worry my little head over this until they do further testing.
Well I have 6 kids in my backyard right now so I better go see what's going on!
