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esgf

May 2013

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IT HAS BEEN TOO LONG

Apr 25, 2013 02:00pm (EST)

I think about blogging often but then I get caught up in "life". As promised I have been trying to enjoy the small things but as usual I am not sure I am succeeding because large things have gotten in the way. I have had a hard year with my Lupus with several "flares". This has caused me to worry more about what will happen between me and Abigail as I age. Will she be protective of me or shun her mother with the cane? I can only hope that we will be close and work on our relationship so that we can be when one day I have to break the news to her. I started in a study to help me "Feel My Best". Mostly what I have learned is that learning to deal with this disease is alot like having Abigail and I think I have just hit the anger/frustration part that I hit when I realized it was going to be a long road with a premie.

She has had a tough winter as well. She did do well in OT but her long-time tutor left for California. Now they are pen-pals but she is still upset and insists "she is never forgiving the penguins". She is softening but it has been a long road. We found a new tutor that she likes and can work all summer.

She had her First Communion. It turns out this is a much bigger deal in W. PA than it was in VA. We went small compared to most people with a small open house after (no dinner parties at restaurants etc with Cake Boss-style cakes). She had a great time. Our families came. Everyone lived. Once she saw her friends at the party she was pretty much done with the adults. It actually did my heart good to see her with such good friends.

She had her 8 year appt. The doctor said she probably has some hypotonia still (hence the OT) and probably the reason why she looks like a worm in the pool but he said to keep trying. At the doctor's it seemed fine, it was after that I had a million questions. Will we ever escape this? Should I worry? Why? Why? Why? However, she gained weight and is on the 10% curve for the first time ever. She didn't really hit a BMI curve but he is not worried. Overall, it went well. I was so shocked she weighed 47 lbs I kind of forgot everything.

Well, it is graduation and exam week. Fun and sadness at the same time

Oh well, she was happy. He told her what a good job she was doing

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NEW YEAR

Jan 09, 2013 05:48pm (EST)

A new year always brings new fun, new challenges and they always go by to quickly as I worry about each little day to day item. Abigail is doing really well in OT. She just got re-evaluated and I will know more next week. Right before Christmas for the first time she finished a writing assignment in the alloted time with reasonable handwriting. She didn't write as much as some kids but the teacher said the answers were acceptable. I don't know who was happier, me, the teacher or the tutor. It feels good to have a good support system. Before Christmas she was having quite a bit of trouble with the same girl who has been making fun of her hands/handwriting for four years. The teacher talked to them and separated them. I can hope in the new year this wanes. However, it seems unlikely she will stop after this long....

Patrick sprained his wrist badly so my Christmas decorations are going to have to stay up a bit longer. We always wait until Epiphany but it is looking like MLK this year. Yes, we are those people.

As with every new year, I promise myself I will enjoy the small things and each year I get a bit better. This year I also promise to get Abigail to enjoy the small things too. Maybe she can remind me to do so. She may not be able to write the details down but she sure does remember them so maybe we can learn to enjoy them?

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SO TOUGH

Nov 02, 2012 08:02pm (EST)

Well, she definitely qualified for OT. She has 1/4 the hand strength of children her age and the fine motor coordination (mazes, writing) of a kindergartner. This would probably explain why she writes like a kindergartner and chooses to write very short stories but can talk for hours on the subject (if you let her). She loves her new OT and we are keeping her with the tutor, tennis and swimming. Hopefully it helps.
This week they had to make salt dough maps at school. I don't know if your kids have made these but it involves all of the things she is not good at: drawing, rolling dough, kneading, writing, cutting and painting. The teacher said she was so proud of her b/c you could tell it took every ounce of strength to do it and she never complained. She said she is just so tough. She really never complains about it (just avoids)
Our little ones are so tough. Maybe they are used to it from Day 1. If only her momma could be so tough b/c watching her struggle or knowing how hard it is for her has brought me to tears more times than I can count this past month. If only I could be as tough as my tiny one.

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BACK FOR MORE

Oct 02, 2012 01:14pm (EST)

Time is flying by. I cannot believe it is October. My parents came to visit and Abigail had a great time with them. They watched her play soccer and she loved having them there. She has decided defense is her thing and she is happy. I hope she stays that way b/c he weekdays are about to be filled up. For my third parent-teacher conference in five weeks, we got good news and bad news. The good news is that she seems to read and spell like the rest of her class. So that most likely rules out many learning disabilities. The bad news is she definitely doesn't write, draw or cut like them. So we are headed back to OT as a starting point. The OT scheduler was skeptical that we needed to be there (I am not sure how she would know but I am sure she has heard it all on the phone) and I don't have great confidence either that she will meet the criteria but I am holding on because I can't think about the alternatives or the lack thereof. I guess I'll know next Tuesday. Patrick is taking her b/c I have to work. Somehow I feel better getting the yes/no to my face.

Oh well.

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MOVING FORWARD

Sep 11, 2012 05:14pm (EST)

I met with her teacher this morning. Wow are we so lucky that she has such a great teacher. We discussed her OT reports and history. She showed me what she has done this year. She thinks her hands are so weak that they need alot of breaks. She is also not good at copying so she is going to track that carefully. She was suggesting games she could have all the kids play that would help her with her hands instead of choosing different ones that would not involve fine motor. She has taught forever so she has a large repertoire but she does not have to do this just for her. She is going to look through the OT suggestions and see which ones she can get Abigail to do. She is meeting with her tutor again tomorrow and they are going to come up with a plan and she thought we should meet again in a couple of weeks. I almost cried when I heard that. One was it that bad? but two, that someone cared so much. Of course I did cry in the car but I held it together in there.
Somehow I feel better. Have a great day.

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CONFUSED

Sep 10, 2012 04:46pm (EST)

Somedays I am so proud of my little one and somedays I worry so. Abigail had her first soccer game on Sunday. She was like a whole new kid out there this year. It finally clicked. She is light on skills but she is getting in there, she even tries to take the ball away from other kids instead of staying on the outside of the pack. She still likes to pass after 1 touch as the game wears on but they don't have half-time so we'll let that slide.
Other days...She kept saying she needed a water bottle for school and her dad mentioned it too but quite frankly I was ignoring it. How much water does a kid need during the day? And this year they have to bring it home everyday which seemed like a sure recipe for losing it.
It turns out the teacher had said to my husband that Abigail needed a water bottle b/c she is too weak to operate the water fountain. Now I don't know how complicated this thing is but I she gets the other kids to help her so obviously the rest of them don't have such a hard time. We went to Target and found 2 water bottles she can operate so one is always clean. Ugh!!!!!!!!!!!!!!!!!!! Just when I thought we were in the clear or that maybe her inability to improve in writing for two years was just in my head. What is going on??
Thank you ladies for listening. I am just not sure anyone else would understand how such a small thing would send me over the edge.

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IT'S OFFICIAL!

Sep 05, 2012 02:16pm (EST)

She did it. All lab work: NEGATIVE. She is discharged from GI. The whole family went out to dinner and she ate a bunch. So proud of my little fighter!

More later

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DISCHARGED FROM GI...MOST LIKELY

Aug 20, 2012 05:14pm (EST)

Just to update from last week. Abigail is most likely discharged from the GI after 6 years. YAY! We were so happy. The doctors was reluctant but my husband went and he is a bit pushier than I would have been. She has to pass another Celiac blood work-up and small bowel chrohn's disease test so we'll know for sure in two weeks. Although she doesn't have to go there she had to check in with the pediatrician 2x a year and still drink boost plus, etc so I am not sure we got out of much. . The doctor didn't want to let her go b/c she only gained a pound this year and her BMI fell way off the charts but she has been healthy otherwise. She has tested partially positive for Celiac's before so he wanted to re-test with the new, more sensitive test. But we celebrated anyways by adding a movie to our date night ( I can't tell you the last movie we went to alone) to celebrate and thoroughly enjoyed ourselves. The Bourne Legacy was good, at least Jeremy Renner was good looking.
I'll let you know if anything more comes of the testing...

Have a great day ladies.

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JUST REMEMBERING

Aug 15, 2012 02:56pm (EST)

We're back from England and France. Of course the second to last day was Abigail's favorite because we went to Disneyland Paris. She loved it. We did all the "things". We ate with characters. We stood in line for autographs, bought t-shirts and pictures with Mickey. It is so much smaller than Orlando but it was just right for us. She was still a good age for things like Its a Small World but not too small to need a nap etc. She loves being home and cannot wait for school to start. She is growing up so fast. A friend of hers gave her a Best Friend Bracelet and she is so excited. I was happy for her b/c I know these things are so important to little girls.

Last week I headed to everyone's favorite doctor's appt., the annual exam. Now, I love my OB/Gyn. He saved mine and Abigail's life through his quick and decisive actions and he is my age so I don't have to worry about switching soon but his office always makes me sad. It is of course filled with pregnant women who probably have no idea how lucky they are. I don't begrudge them that, in fact I was really happy to see so many happy, healthy pregnant women getting great care, I just wish I was them. It is really the only time I still get very sad that I can't have more children. After I had Abigail they said it would be dangerous for me and after the stroke the doctors strongly recommended never having children (His exact words were "we can't tell you not to have more pregnancies but we strongly advise against it as it would be extremely dangerous for you and the baby and you would be unlikely to survive". I could tell it was hard for him to tell me and I knew in my heart and mind they were right before they even said it. I still know it but that one day a year it is hard to sit there in a room full of really happy pregnant people. To be honest I was so happy when they all got taken back and I was left with two post-menopausal women.

It is a new week though and I am back to my New Year's Resolution of just being present in the now (now that you all have listened to me vent). This week is going well. Work is going smoothly. Abigail learned to ride her bike without training wheels really well and today she heads to GI. Last year he said, this appt may be her last. She is going with her dad. I hope we get to celebrate good news at our date night.

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SECOND GRADER AND OFF ON AN ADVENTURE

Jun 28, 2012 07:18pm (EST)

I have been missing from Share but I think I have a good excuse...We are in England for 6 weeks and France for a week. I am working but Patrick and Abigail are with me. They are having a blast and on the weekends, I have been able to got to London with them and to Wales. This weekend we are back to London for a day. Abigail is mostly enjoying it, although she does get homesick. It is funny how kids are kids. She really gets into the museums and stuff but I think the great playground nearby might be her favorite thing or riding the double decker bus. We took one of those double decker tour buses around London and she didn't want to get off for lunch b/c she was having such a good time. The weather and food are as bad as advertised but work is going okay and the change of scenery is good for all of us.

Abigail finished first grade with a flurry of doctor's appts (which did not help us getting here w/o anxiety). We came armed with physical therapy exercises for her ankle, steroids, and antibiotics because she could not stopping coughing for six weeks. I thought we were so ready for the trip b/c she had been so healthy and then this. The promises of drug vacation from the pulmonologist vanished and I have to say I had really been counting on it. Somehow I thought that would have made her "caught up" or normal. I know that is silly and I should know better by now but I still fall into the trap.

School-wise she was sad to leave but the class went to a museum to celebrate and it was fun to see the kids play together. She got sent with plenty of homework for the summer, mostly handwriting, and everyone has assigned summer reading. Her teacher said she has to write everyday which is impossible here but her tutor gave us lots of ideas and she has been writing most days. Still...I am dreading cursive. Oh well we will enjoy our definitely once in a lifetime experience.

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