Two more months to go for Elyssa to be out of school. I don't mind her being home because we play a lot and she has gotten to the point where she likes to snuggle with me in my recliner while we're watching a movie. What bothers me is wondering if we're giving her enough stimulation, just as she gets at school during the school year.
E is doing really well in gymnastics; she had her eight class today and she's progressed little by little and I'm very proud of her because she was scared at first and everything was new. I'd like to have her courage though because she at least tries new things when her teachers ask her to. At first, she had trouble with the bars and lifting herself up or having the bar against her belly. She cried every time but it didn't stop her from trying again. Once we figured out it was her arm muscles and tummy that were hurting, I'd rub her arms and that helped and now I don't have to because her muscles developed quite a bit. She still hasn't done a flip on the bars but here is how close she's gotten - half way there.
Beginning July 26, her and I are starting swimming lessons for a couple of weeks and that will be fun. I scheduled gymnastics so she can do both, which will keep us both busy but that's OK - she's worth it. Kathy took her to the swimming lessons last year (like a Mommy and Me class) and they had a great time so I know Kathy would be pleased that we're doing it again this year.
For the fall, I'm hoping we'll get her into a special needs dance class to go along with the gymnastics. I'll cut the gymnastics down to just one day a week because I know she'll get over tired if we push too much (with going to school too).
Last year, Kathy bought a small bouncy castle on some promotion and we unpacked it last weekend. Boy, talk about fun for Elyssa! She bounced all around and had a blast. We set it up in the front yard in the evening hours (where the shade is) and a couple of neighbor girls came over to play too and the three of them had a blast. The girls were so good with Elyssa and helped her learn to bounce and jump as they were doing. She's not ready for flips for a while but I'm good with her just jumping! LOL I feel like an over protective mother at times, which is nuts because I know she'll learn flips in gymnastics one day!
I think I'm ready for a nap... she keeps me going and I already have fatigue issues. *yawn* Gee whiz, I'm tired! Oh my... that's something that's suffering... damn, my priorities are really messed up. ;-)
On another subject, we've saved enough money to get Kathy's marker/headstone done. We chose a 4-foot bench and I'm really excited to see how it turns out. Kathy loved calla lilies and Celtic symbols so we designed it just for Kathy. We're actually using it for Elyssa as well since her plot is next to Kathy's when (God forbid) it's Elyssa's turn, just the date of death will have to be engraved. I'm really excited to have it finished and placed for Kathy; we missed her birthday (which was May 5) but I'm sure she understands. It will be nice to sit there and have chats with her and take in the beautiful mountain scenery.
I've rambled on enough for today... I'm off to see what trouble the Doodlebug is into :-)
I love this time of year when the roses are finally blooming in the way that only they can.
Remember to take the time to smell the roses and feel the sunshine on your face because there's nothing like it.
My sweet kitty Ashley, since 2006. I still miss you ... will always love you.
Since I have been waiting the ruling on disability from work and Social Security, I've gone without Remicade, which is one of the most important medication that I need for Rheumatoid Arthritis, Chron's Disease, Ulcerative Colitis, etc. So I've been in a lot more pain and fatigue since last January when my company took away my insurance. I didn't do COBRA (way too expensive and a few more reasons...).
The nurse at my Rheumologist's office gave me a form to fill out in April to assist or completely cover the cost of the Remicade (we're talking $17,000 every 4 weeks) . I submitted the paperwork and within 2 weeks, they approved the coverage for the $17,000 Remicade! I was really excited about it!
Since I went without Remicade for five months, the chance of me having an allergic reaction is very high to they premeditate me. I had the first treatment 4 weeks ago and they had me take Zyrtec (allergy), Tylenol, and another vile of something I didn't recognize. I was fine and the treatment went well, however today, despite pre-medicating the same way, I almost went into anaphylactic shock. I couldn't breathe and could barely squeak out "help" and the nurse and the nurses aides reacted immediately. They gave me a syringe full of Benedryl, (about 4 ml, I believe) through my IV and then slowed the Remicade IV down, and put me on the oxygen.
I don't know why I didn't freak out, perhaps it was because I felt I was in good hands (which I really was) and probably a little bit of shock, and that whole lot of Benedryl (LOL)
My nurse assured me this happens a lot, hence the pre-medication and it usually hits the 2nd treatment and usually about the same time in the cycle of the IV treatment, which I found interesting.
After I've been home a while and had time to process it all, I realize how close I was to being in big trouble. Hopefully I'll feel better as the day goes on because I definitely feel better than I did last night when I went to bed.
At least my life is still exciting despite not working!
After weeks of trying to find a fun activity for Elyssa over the summer, I found a gymnastics class. She's not very coordinated but she can stretch and do a few things so we gave it a try. She was so excited to try something new, which made me so proud, but not really knowing what was involved. She has so much courage, it amazes me.
After talking to the owner, we thought it was best to put her in the pre-school class since she's never been exposed to gymnastics and also with her special needs, she may not fully understand what all is happening. We also didn't want the older kids making fun of her; it should be a positive experience, not a negative one. The pre-school kids were so cute and Elyssa got along really well with them.
They started out stretching then went to the bars to work on balance. The teacher worked with her quite a bit on the bars and E was having a lot of fun. She was a little scared but she kept trying, however, the bar that was about waist-high, there was NO WAY she was going to try that one and I can't blame her. She'll try it when she's ready.
The teachers are incredible and they had these tiny little kids (around 3 years old) flipping around on the poles, holding themselves up with their arms, doing scissor exercises, and all sorts of things. However, E had a really tough time with it and she actually cried and it took me a few minutes to calm her down. Through a series of questions, I finally figured out that her arms and tummy were hurting from the pole. But she kept trying and that right there makes her my Gold Medal Winner.
With each class (twice a week), it will be easier and she'll develop the muscles and strength she needs.
One part of the class is to jump in a giant pit of foam blocks, toss the blocks around, "swim" around in the blocks from one end to the other, etc. This was definitely her favorite part.
I caught this photo and the look on her face cracked me up. She has such an expressive face and if you blink, you can miss a doozy of an expression. I was really lucky to get this shot.
The end of class, they did some tumbling and she did some sommersaults (sp?) and some rolling around on the floor; she just had a ball.
I'm grateful I was prompted to look into gymnastics and able to find a class for her. There's not rush in moving her up to another class - as long as she has fun, that's what we care about.
In the fall, I will sign her up for dance lessons. There is a studio in the area that offers dance lessons for special needs kids so that will work out perfect. Depending on how tired she is, I may keep her in both gymnastics and dancing, perhaps one day a week for each. These classes will not only strengthen her body but also her self confidence.
I admit that after I registered E in the gymnastics, I had a good cry. It was a mixture between being so happy that I finally found something for E to do this summer but also feeling Kathy's joy in my heart because she always wanted something like this for E. Last summer, Kathy and Elyssa took swimming lessons together and I've already signed E and me up (not until July) and I'm really looking forward to that.
I've actually had quite a few little cry sessions lately and I think it's Kathy touching my heart and letting me know that she's happy with what I'm doing with and for Elyssa. I surely don't do it alone though, my family is very supportive and our goal is to make sure she has every advantage we can give to her.
Now to talk to the Legislature and straighten them out about increasing budgets! Don't get me started on that... that's a humongous post and rant for another day ;-)
On a side note, we finally got the money together for Kathy's headstone. We actually went with a 4-foot bench with Kathy's information on one side and Elyssa's on the other (just to plan ahead since she has a plot next to Kathy). I can hardly wait until it's done. We used some Celtic symbols (for motherhood and eternity) and the cala lily, which was Kathy's favorite flower.
I'd like to welcome Dawn, whom many of you know from blogging in the past. She will be blogging here from now on and has her own webpage HERE where you can bookmark or navigate along the left side, you'll see a link to her page. Please visit her and welcome her back!
I'm really happy to have you here, Dawn! Love ya!
Last night my sister Susie came over to give Elyssa her bath and Elyssa surprised her by doing "the one cheek sneak" fart in the bathtub. Susie immediately asked if I taught her and as much as I'd like to take the credit, it wasn't me. She must have saved it for her Aunt Susie... shows who she loves more, doesn't it?... ;-) My mother was horrified but we all had a good laugh.
Kids do the darnest things.
As frustrating as some days are for my new motherhood calling, it takes one look at this little girl to make it all go away in an instant. My frustrations stem from hers, which are usually communication issues, but she doesn't show the frustrations often.
She loves new toys, as most kids do, but she seems to find the misfit toys and must have them. Saturday, she spent the day with Brenda (Kathy and Elyssa's previous roommate before Kathy died) and she brought home some a Ronald McDonald pop up toy, the strangest little plastic chicken I've ever seen, and let's not forget the little toy that isn't quite Diego. She could run the Island of Misfit Toys when she's older, I'm sure.
I'd like to get into her mind and see how her thought processes work to get a deeper understanding of the what's, want's, and why's. She finds laughter and joy in almost anything but she has the most tender feelings. No one can cry around her without her crying right along with you and if anyone happens to mention an ailment or pain spot, she experiences the same thing. So, with all my pain, I have to be careful what I say around her.
Although I've seen her almost every day since she was born, she never ceases to amaze me. She is definitely my hero.
Saturday, Elyssa was helping me with some laundry and I mean her type of helping, which isn't much help at all but at least it's entertaining. She grabbed my pajama bottoms and flipped them over her head. I was laughing so hard and so she hammed it up even more and I grabbed my camera and shot a few pictures. She reminds me of the Maharajah (no disrespect to him).
See what I deal with every day? Yes, it's great and I am grateful for every little giggle.
Then on Sunday, I noticed she fell asleep while watching a movie and it was so cute. I'd just been shooting some photos so I decided to take her photo... word to the unwise (who is me if you haven't guessed by now).... she's a light sleeper and I woke her up. I felt so bad. But isn't she cute?
Oh well, she went back to sleep after watching Barney for a few minutes so I didn't feel so bad. ;-)
I had the best Mother's Day, aside from being in major pain, and I hope everyone else did as well! Elyssa gave me lots of hugs and kisses. I was more grateful than ever before to have my mom here this year (after her aorta valve replacement and almost losing her in February).
I felt bad that I wasn't able to get to the cemetery to see Kathy with Mom and Elyssa but I could barely climb the stairs for dinner let alone get in a car. Thank goodness for Susie helping Mom with dinner. I did most of my cooking on Saturday but baking the ham and putting all together, I usually help with.
The afternoon was a quiet one and everyone got naps, which is almost unheard of around my house. It really was a wonderful day and spending time with my family is irreplaceable.