Next week we are going to two different banquets to celebrate Av's accomplishments with her freshman dive season. The first one will be in Hartford,WI for the All State awards and the second will be in Green Bay, WI at Lambeau Field (Home of the Green Bay Packers) where they are having Clay Matthews as a guest speaker.... it should be a great time. In the local paper there is an article about the kids that made the honor roll and I'm excited to report that Av made the A honor roll. I'm just beaming with pride!!
Av's club dive season already had it's Regional meet in Iowa at the University (Go Hawkeyes!!) and Av placed into Zones on the 1M and 3M springboards. Zone this year will be in June at Schroeder Aquatics in Brown Deer, WI. I'm loving that it isn't too far away....just one hour and fifteen minutes away. If she places in the top 12 of each event she will then move onto Nationals which is being held in Columbus, OH in August this year. Right after Zones are done she'll be heading back over to Iowa for their 5 day long summer dive camp. She really enjoys their summer dive camp program and this will be her 5th time back there. Av decided to give Indiana Universities summer dive camp a try this year and will be hanging out there the first week in July. In addition to Av's diving this summer she is registered into the class/written part of Drivers ED......NO ~ say it isn't so! She has to wait till 15.5 yrs to register for the driving part of the class which won't be till this time next year, but she is already getting some time behind with wheel with Dan n I around the neighborhood and she's a very cautious and attentive driver.
Last week I was called to come to school to pick up Av as she had a bad headache and didn't feel good. It came on abruptly and very intense which was alarming as she really doesn't even get headaches. I ended up taking her to the ER that afternoon to make sure nothing serious was going on. Thankfully she checked out ok after they did labs, an MRI, and a concussion test. Part of me was glad they did an MRI as I knew if there were any lesions or other signs of MS that would be seen as she has a higher probability of having MS seeing she is a girl and I have it. Thank GOD all was clear with that. I also took her into get her eyes checked out to make sure there wasn't any change there and I brought her to see her Primary as a follow to our ER visit yesterday and the plan is to she if this happens again before doing anything. The theory is she had a migraine and time will tell if we will need to intervene if she continues to get them.
Tonight we have Av's last band concert as a Freshman. Wow did 9th grade go by fast!! She still will be performing as she will be marching in the Memorial day parade. Av found out that she was enrolled into the Advanced Wind Symphony for next years band. From what I gather it's one highest band class to be in. It should be a scheduling nightmare in the fall with her dive season going on and the requirements of the band performances. EEEEP! Av was also excepted into the Launch program for next year. This is a leadership program that is designed to help the in coming Freshman. It was a very cool process for her to go through to get excepted and they have already had a couple training leadership trips and they have a few outings and retreats planned this summer before next school year starts. Av and the group she was assigned with not only will be helping the coming freshman navigate the school but they will be conducting a class called Freshman Seminar that they will be designing lesson plans and teaching for the first semester of the year. I've heard great things about Launch program and I'm excited to see how she does.
Danny had been doing well and is stable ...for the most part. We just had a "fun" filled day down at Children's Hospital of Wisconsin with trache/vent clinic where we see Pulm, Ent, trache nurse and a Vent nurse. They were all pleased with Danny's respiratory status and how good he looks. There was no change done at this visit and we are to see them back in 6 months. I am very excited and cautiously optimistic about CHOW showing interest in a new vent that I have been requesting to trial on Danny. It's call the Astral vent and I've been on the push from Danny to try this for awhile. I think I almost have them on board now as they are going to be looking into seeing if the company can bring a vent over for them to check out. It is a smaller unit which is also lighter weight (7 lbs vs the brick we have now), the internal battery life is 20hrs vs the 2 external batteries we have that only last 5 hours if we are lucky, and I hear that they can remotely trouble shoot the vent via internet vs having to be here at the house (which the closest RT is 45 minutes away from us). Cross your fingers that this can work out for us. Danny does have an open order in the system from ENT that when the next surgical procedure happens they will come in and do a Bronc to take a look down his trachea, and deep clean his chronically nasty ears. We don't have anything in a hopper yet, but with him never having a deep teeth clean and now this we might just do a "quick" day surgery and get it all done at one time. After the 2 hr trache/vent we had a GI and dietary appt to go to. That too went pretty well and I had to agree to not make any changes in the next 6 months seeing we've finally stabilized his weight issues. I would really like to bring back some real food blends into his diet but with his fluid and calorie restrictions it's always a fine line of what we can do before his weight sky rockets because addl calories and water retention. I'll just have to go with the flow for a bit and see if he continues to behave before I really think of starting anything again as his weight being at 94 is still Husky but more manageable then the 102 he was at. Hey I have a good reason to call him Pork Chop - LOL. We also went over and had a full spine with hip xray done to check to make sure things were doing ok on the Ortho front. I have seen the reports but have not talked with the doctor about it but I do see there is now an abnormality found in his left hip which could be the cause to some of the issues we are having with positioning. I have an a request for an appt time to talk with the Ortho so we can go over the xray results.
In other not so good news....Our primary nurse Ms Emma has decided to look for other employment opportunities. There are many variables in being a home care nurse and it's not for everyone. We loved having her be here to care for Danny and she has become so much more then a nurse to us. She is and always will be family to us. So once again we are in NEED of private duty nursing hour coverage for little man. Unfortunately there is a HUGE shortage of home care nurses in the Valley and ones that are trained with traches and vents are even more scarce. UGH!!
Thanks for stopping by to check on us. I hope this find you well!
Here are some photos from Easter
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