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Hi ladies... its been a while since I have been here. Doesn't help I have no working computer at home! But I know Augie has been updating you all about Joey's broken leg so I figured I could pop over and post an update from today (copied from his caringbridge page)
Its been a good day for Joey. He is basically free of pain at this time. We give him motrin around the clock, but only for inflamation and to make sure he has something on board for whatever pain he might have. He has needed NOTHING else.
His IV is no longer any good, so we took it out today. There was a talk about whether or not to put it back in and we basically decided that since he hasn't needed morphine today and since the pain control plan we have uses oral medications mainly (and since he hasn't needed morphine, chances are we will only need oral at all) it is better to just leave it be. No sense in poking him more than we need to! When it comes time to take him to surgery again he will need an IV again, but thats then and this is now.
He had a blast opening his Joy Jar today (Thanks Elizabeth) and LOVES all the goodies that came in it! He especially loves the little harmonica and tamborine and playdoh and slinky!
Omi also stopped by and brought him 2 stuffed snakes to protect him and a monkey he can talk through (its a puppet). While he wasn't all that nice to Omi, once she left he was all over those toys! He's currently got a snake on each side of him, a monkey on his left hand, a sippy cup in his right hand (drinking a chocolate nutrition shake since hes not wanting to EAT the food they serve... who could blame him), and is watching Cars... complete with Joey commentary. And Joey commentary is hilarious. This is one of the few times he has not been in video game world today.
His energy is back... which does create a bit of a problem. He wants to move, but luckily he realizes that moving the wrong way can hurt him, so when he wants to move or adjust himself he asks for help and is following directions.
Last night he got a complete sheet change on his bed... not an easy task when hes IN it and it hurts to move certain ways. But it does seem that it hurt less than it did to do some moves. For example, I can change his diaper, by myself, without hurting him. And I can change the chuck and blanket we keep under him without hurting him (good thing too... it needs changing every time he snacks or plays with playdough, otherwise we find food and playdoh on his back!)
He is NOT happy to be in diapers right now, but he is understanding that he can't use the toilet because "it would hurt him very very bad". I am not sure HOW things will be once he is in a spica.
I have been talking with the case manager about discharge. I need to be prepared before hand, so its important to start discussing it now. First of all he will be coming home in a reclining wheelchair. Now I know my son, and he won't stay in that chair without a buckle so I have requested a buckle be included and they have agreed to order it. Also he will not be able to fit in his car seat... or ANY car seat properly. However apparently they have a special harness that is used with a standard seat belt and he will lay sideways, essentially a modified car bed. The ortho surgeon will give it to us once he is in his spica. My mom and husband are hard at work getting my house ready for him. It needs some changes since we are not exactly wheelchair friendly. Our maintenance guy is also helping ensure that no matter what, Joey will be able to get INSIDE. We have a ramp we can use, but if it doesn't work, he will build a ramp for the time being. he is also putting a barrier up between the street and our unit, because people tend to use our walkway to get to the liquor store and the ramp will be a trip hazard. We don't need this walkway, so this works great!
Tomorrow morning my mom is coming to sit with Joey so I can go to church. I look forward to being there. They have been so loving and supportive of our family, and I am so happy to be part of such an amazing church!
Now, I get a moment to brag! My birthday is in 4 days and I am a bit down that I am spending it at the hospital. And so many times when we are in the hospital or dealing with a lot of medical stuff, things tend to get ignored. So I really didn't expect anything from DJ or the kids, because I realize how much time, energy, and attention is going into Joey's needs as well as the older kids needs. But DJ surprised me today and brought my gift down to me. He had been going through a chest I have that is full of photos. He found some beautiful pictures and went and got a beautiful collage style frame that holds 8 pictures. In the center is a wonderful centerpiece talking about FAMILY. I cried. It was the most heartfelt gift he could have gotten. He explained that he put my picture (from when I was 15!) at the top because it all stems from ME, which makes me want to cry even more because its sooooo sweet!
Well its time to wrap this up... Joey has discovered the lights button on his "magic wand" (you know, the TV control, Nurse call, and lights controller) and is turning his lights off and on off and on... effectively driving me INSANE! Gotta love this kid!
As an added update, we changed churches several months ago. Our old church never showed the love and support we needed while Joey was sick and going through chemo. The only time anyone did was when we had the interim priest, and he showed so much love and support. But when he left we decided to go elsewhere, because we need to feel that we have a church community, and not like we are outcasts. We found that in our new church from the very first. But until now, we have never had need to see the difference. This week we have. In the 3 yrs that we were with the old one, no one reached out to even say they were praying for us, except the priest. In this week ALONE one of our priests visited Joey and me, sat with me for an hour, offered to spend some time with the older kids doing some counseling, in a public place (such as having coffee/hot chocolate or a happy meal), I have seen 4 prayer requests get sent by email from 4 different groups in our church, I have gotten calls just to let me know they are praying. The support is amazing! I never knew this kind of support in any other church and I don't feel alone. And to be honest, the difference in me shows too. When I didn't have the real life support, I was easily irritable and stressed. This time I am mellow and easy going because I know I am not alone in real life. My support system is vast this time around... online, in person, by phone, etc... and it really does help
I'm glad to read an upbeat report, Traci! I will continue to pray that Joey has a fast recovery and that the doctors and nurses listen to your concerns and realize that you are knowledgable about Joey's condition. And congratulations on finding a new church, I think I remember you mentioning before that your old one wasn't very supportive so I am thrilled that you found somewhere that gives y'all the love, support, and sense of community you deserve.
Glad joey is so strong. Hope he recovers quickly and I hope he can stay still in that seat.
I am so happy that you found a great church. Sometimes it really does help so much to have a great support system at a church.
First of all HAPPY BIRTHDAY! what a sweet gift from your dh.
Second, I'm so glad to hear that Joey is healing and feeling better! Praise the Lord!
Third, How wonderful that you have such a supportive church community around you now!
Fourth, Anna (mamma_anna) asked me to pass along her *HUGS* and Prayers for you and Joey. I saw her yesterday. She doesn't have internet right now but wanted you to know she's thinking of you.
Praying Joey can come home soon.
__________________ Audrey ~Daughter of the Most High King
~Wife to my Best Friend
~Mother of Miracles