Journal Updates 2011 & 2012
Tuesday, December 25, 2012
Christmas finds Miss Erinne HOME from her ICU stay in the hospital, but still battling her pneumonia -- specifically, pseudomonas. A VERY nasty bug to get. She is still pretty junky-sounding and needing oxygen, but she's taking baby steps in the right direction.
She is scheduled to get her trach on January 4th, 2013, *IF* we can get this bug cleared up. Please pray that her lung clears up quickly, so the surgery can go off as scheduled.
God Bless you and yours on this precious day, the birth of Jesus.
December 20, 2012 Thursday
In The Hospital Right Before Christmas!!!
Erinne was admitted to the hospital this evening with right lung pneumonia. Her biggest fear right now is that she won't be home for Christmas.
November 29, 2012 Thursday
The Worry Continues....
This month we've met with Erinne's pulmonary (lung) doctor, maxillofacial surgeon, sleep neurologist, ENT (ears, nose and throat), pediatrician and orthodontist to discuss her mid-face hypoplasia (center of her face sinking in) and her sleeping problems. The sleep study problems (listed below) are believed to be the result of her breathing difficulties. Everyone seems to be on board with the idea of traching Erinne. We just need to iron out the details. We are meeting with all the doctors on December 10th to work it all out. I am leaning towards doing it the beginning of January.
Erinne could use lots of your prayers and, when she is in the hospital, if you are local, schedule a visit. The hospitalization will likely be 10 days - 2 weeks. She gets pretty lonely up there. Erinne is very worried about the surgery and the afterwards. Thanks for the prayers......
November 18th, 2012 Sunday At A Loss and Worried
Erinne has me worried.
She seems to be having more and more problems with her breathing and sleeping. She had a sleep study completed which showed that she stopped breathing 67 times during the night, and never transitioned into REM sleep. Can you imagine what life is like not having restful REM sleep? No wonder she is exhausted all of the time, and sleeping 18+ hours a day. I am wondering if her respiratory muscles are weakening and she can no longer go all day without breath support from her bi-pap/vent machine? Her SMA had plateaued for so long that I am wondering if the disease is starting to progress again.
It seems to me that we are facing the trach decision. I honestly don't see her being able to continue to survive without being trached. She is already dependent on her machine to breathe for her for 18 hours a day....what's next?
We will meet with a couple of her doctors after Thanksgiving and, I hope, have some answers to these difficult questions.
This isn't fair. Erinne deserves better.
I hate SMA.
October 16th, 2012 Tuesday
I just realized that I haven't made an entry in MONTHS! Oh MY! When we got back from our Cruise things ramped up quickly to crazy and have stayed there!
First off, the Cruise was WONDERFUL! It was a new ship and 97% accessible (the inaccessible parts were the Zip Line, the Surfer waves and the putt putt -- that's it.) Pretty good for a ship longer than 3 football fields and 18 stories high. Erinne loved the food -- she ate either steak, shrimp or lobster (she ate 3 1/2 lobsters on the trip!) every night. We stopped in Labade, Haiti, Falmouth, Jamaica, and Cozumel, Mexico. The very best part of the trip for was went we got off the trip in Cozumel, Mexico and went on a trip to a dolphin park. Erinne swam with the dolphins! She ADORED the dolphin that paid special attention to her when he wasn't following his commands from his trainer. I was also in a wheelchair/scooter on the trip because my knee was a mess and there was no way I could do that much walking. You know the saying about "once you try a cruise, you'll always want to cruise"? It is true!! We will cruise again in the near future. :)
Second, school started back up. Erinne is now in the 10th grade(!) It is really kicking her butt. Just the act of going to school is taking every last ounce of energy out of her. She comes home and immediately goes to sleep -- frequently until the next morning at 5:30a. That's sleeping from 2:30p-5:30a the next day -- no homework and no dinner (thank goodness for a feeding tube!) We are trying to change her wheelchair seating to see if that can help with a little bit of the fatigue. Erinne is also needing to be on oxygen at night because she is too tired to breathe properly.
Third, Erinne is having many problems with her midface hypoplasia (the center of her face is sinking in, due to the breathing machine pressures she is on at night). One of the problems happening is it seems to be causing sinus infections that won't clear up. So that is causing fatigue too, as well as chewing and swallowing issues. She is being followed by the orthodontic doctors at the U of M, who are then working with the maxillofacial surgeons on her case. Erinne will be having MAJOR reconstructive surgery next surgery. This will probably be as big, if not bigger than, her first scoliosis surgery at age 9. But we've got to get her through 10th grade first! The back/tailbone pain is still there too, contributing to her fatigue and daily battles with pain. So you can help by praying for pain relief for Erinne. I hate to see her suffer.
Finally, adding to the pain problems ... when I picked her up and moved her in her bed Sunday night, I had her left arm between her side and my trunk and when I scooped her up, I heard and felt <a snap> and she began crying immediately. The wrist swelled up as did her fingers. I put a carpal tunnel-type splint on it as well as a sling. I am taking her in to see her orthopedic surgeon tomorrow to get an x-ray and see what is wrong. Poor baby!
I will try to do a better job at making these posts a little more regularly. Please keep Erinne in your prayers, asking for relief from the pain she deals with on a daily basis. She is such a trooper, but she is wearing down. God Bless!
Tuesday, July 31, 2012
We are leaving Sunday to head to Florida for our Cruise! We are driving down, because Erinne has too much equipment to try and fly. We will take our time driving down, stopping at points of interest along the way. We will head to Key Largo to swim with the dolphins before we board our ship for the cruise. We will be on Royal Caribbean's newest and biggest ship, The Allure of the Seas. It is over 3 football fields long! Latte is going with us too. :-) A friend is coming to help me with Erinne, and Kevin is bringing 2 friends. (Unfortunately, Claire & Steve decided not to go with us this year.) Erinne is VERY excited, as we have not had a vacation since her Make-A-Wish trip to Disney World in 2000. On the cruise we will be stopping at Jamaica and Cozumel, Mexico. I'll try to write more along the way.
June 2, 2012, Saturday
SHE DID IT!!!
Erinne finally made it on the Michigan Mustang Travel Hockey Team! -- The only girl too! She is on Cloud Nine and I am so proud of her! Making this team has always been one of her goals. And when I say "Travel", I mean TRAVEL!! They have a tournament in Ottawa, Ontario (Canada) in August! WOW!!
Friday, April 27, 2012
I have my smiling, happy Erinne back!! The last surgery did relieve her of a lot of her pain. There are times when she is even pain free. She is back to playing hockey and her team is in the Wheeler's Cup Championship finals. If they in, she gets her name inscribed on the cup (just like the Stanley Cup) and also like the Stanley Cup, she gets to have the cup with her for a day.
Her surgeon was very happy the she healed up so well and that the ligament release (cutting the ligaments) worked. From my understanding, it is a guessing game as to which ligaments to cut to relieve pain. Erinne has a lot more movement in her legs and with the ligament releases; she stretches out a bit more when she is in the pool. You really can see how tall she is then!
I can't begin to describe how happy I am that she is doing so much better, and needing less pain meds as well!
April 12, 2012, Thursday
Surgery #21 Over
Erinne had 3 ligaments on each side of her hips released (severed) on Tuesday 4/10. The surgery went well and there were no complications. Erinne spent one night in the hospital and came home yesterday. Last night she slept for over 18 hours! While she is still very sore from the surgery (#21 if you are keeping track), her chronic pain is better. Instead of being a 20 on a scale of 1-10 (which she was every day), she is now on the pain scale at an 8 out of 10. I know that still sounds awful, but I am actually happy with that, being that she is just 48 hours post op. I did a dressing/bandage change last night, which was traumatic (for her). The real test of how much pain she has comes tomorrow when we head out for a doctor's appointment. She starts back in physical therapy in the pool on Monday.
Monday, March 19, 2012
Pain and More Pain
The nerve block didn't work, meaning the pain is not coming from a pinched nerve. The amount of daily pain she lives with would bring an ordinary adult to their knees. I hate seeing her like this and I would do anything just to make her pain go away. She is looking at another surgery now, to release (cut) her hip abductor ligaments. The surgeon is fairly confident that she will have pain relief from this surgery. I don't have any choice but to believe this surgeon. The surgery is scheduled for April 10th. In the meantime, she is on another strong pain medicine. It doesn't take away the pain, just makes it a little easier to bear. On a daily basis, she can be heard in her bedroom, moaning and crying from the pain. Not too many smiles coming from her, either. So sad. Please say a prayer for my Rosie, that this suffering will soon stop.
March 3, 3012 Saturday
Nerve Block Done; Now We Wait
Erinne had her nerve block on her tailbone done yesterday. Now we wait a week to see if it actually hits the spots she is having pain in. Today she is hurting quite a bit and doesn't feel good, which I attribute to the anesthesia and a sore throat which is probably from the intubation. She is pretty miserable all the way around and is taking her second nap of the day.
February 20, 2012 Monday
Wow -- Where Has The Time Gone?
I can't believe it has been a month since I last posted. Life has been very busy and it seems like the only way I was able to keep updates going was through Facebook (send me a FB request if you'd like).
Erinne has lost quite a bit of ground in her recovery. She never made it back to school except for a few hours. She has developed more pain issues starting around the 1/29 or so and it has been all downhill from there. She can't get out of bed, can't sit in her wheelchair and can't go anywhere except (very painfully) to doctors' appts. No one can seem to find out what is wrong. It seems like a pinched nerve (like a sciatica) is the problem. She is going to have another nerve block done on 3-2-12 but I want to get to the root of the problem rather than just getting a block done every couple of months. Erinne is depressed and tired of being in pain. And very tired of being stuck at home. I don't blame her. I really don't know what caused the problem, other than being jarred a bit during a hockey game on 1/29. So life has not been 'normal' for her since her surgery December 8th -- can you believe it? Believe me -- it sucks.
I hope to have better news after 3-2-12 to share with you.
Wednesday, January 18, 2012
Trying To Get Back In The Swing Of Things.....
Erinne is now 2 weeks past her jaw surgery and 6 weeks past her spine surgery. She still is dealing with pain, albeit less than she had right after surgery. Her stamina and strength still are not back to normal and her face is still swollen. It always worries me when she loses strength and stamina because sometimes I fear she may never get back to 'normal'.
She has returned to school, half-days. Finals are next week. Her teachers have been GREAT about keeping homework to a minimum (omitting the 'busy' work and doing just enough to show she understands the materials) and giving her plenty of time to get things completed. She starts back to hockey this Saturday and while I don't think she will have enough strength to play the whole game, at least trying to do something fun and normal will no doubt lift her spirits.
Wednesday, January 11, 2012
Erinne Surgery #2, 6 Days Post Op
Erinne had her second surgery on Jan 5th. That surgery took out 6 teeth and 4 jaw plates. It was more painful than expected. Erinne also developed cellulitis in her right cheek (inflammation/infection of the cells - very painful) and an aspiration pneumonia from the stuff that ran down her throat during surgery. This is definitely a setback. She is on an antibiotic to get rid of both. If I had to judge by how she is now, I would say she is not ready to return to school, as planned, on January 17th.
This past month has been a lot of pain -- some of it unexpected. She seems depressed -- definitely tired of being laid up. I know she misses school too.
~~~~ 2011 ~~~~
December 31, 2011
Erinne: 3 weeks + 2 days post op
Saw her surgeon on Wednesday who was pleased with how her incision looks. Still having issues with muscle spasms and pain, which will resolve with time. Strength is slowly returning. Next up: On Jan 5th, Erinne will be back at the hospital to have 4 wisdom teeth dug out, 2 other teeth pulled and the plates in her jaws removed. (I know -- doesn't seem very fair, does it?) Another overnight stay in the PICU is planned. Seems like she should win the lottery or something after all she has endured this month.
My 2012 Prayer: Please God, may THIS be the year of the cure for SMA. I want my daughter to have an opportunity to grow up. Please.
Happy New Year!
December 22, 2011 Thursday
Erinne Spinal fusion surgery - Post Op day 14:
She has finally turned the corner and we are managing to stay on top of the pain. She still is very weak and has a hard time holding up her head and doing homework. She fatigues easily and is napping 2-3 times a day. BUT, we're finally on top of the pain and that is what is important. We are measuring improvements in baby steps. She sat up in her chair for almost an hour, until her head became too heavy to hold up. She still is very weak. Pain is mostly controlled, and muscle spasms are still happening 2-3 times a day. We won't be able to go to church tomorrow, but that's okay.
Thank you everyone for the birthday wishes!
Saturday, December 17, 2011
Post Op Day 9 -- Unchanged = Not Good
We just can't seem to get a handle on this pain. I spoke with a pain specialist on Friday and we are trying something else to get Erinne some pain relief. It is sad to see her so miserable. Every time she gets out of bed (to shower or use the bathroom) her pain levels just shoot up. With a doctor's appointment on Wednesday, she is never going to tolerate the ride to the doctor's office if she can't tolerate being up a little more.
Tuesday, December 13, 2011
Day 5 Post Op Spinal Fusion
Pain management continues to be a problem for Erinne. The doctor has increased the amount of medication Erinne is taking but she is still having a hard time getting on top of the pain. I feel so bad for her. She did get in the shower yesterday right before I removed her dressing and she said that the shower felt wonderful (not the dressing change!)
Getting mail brightens her day. If you'd like to send her a card, our address is 8440 Orhan St, Canton, MI 48187.
Hoping for a better day tomorrow.....
December 12, 2011 Monday
4th Day Post Op - Ouch!
Pain is the word of the day. Erinne is having a hard time managing her pain on the pain meds we were send home with. I put in a call to her doctor, who is checking into what else she can prescribe. Erinne has be out of bed and up doing homework (no rest from that!) and playing video games, but she tires easily and needs to catch up on her beauty sleep (she is up a lot at night with her pain.) I am praying that she will turn the corner soon and start feeling a little less pain.
December 10, 2011, Saturday
Day 2, Post Op Spinal Fusion
Erinne actually got out of bed yesterday, her first day post op, and went tooling down the halls in her wheelchair. Even made it downstairs to the gift shop. She sort of stirred things up on the incision and had a bit of bleeding going on from the movement. But the doctors weren't concerned.
Consequently, since she did so well yesterday, they LET HER GO HOME TODAY!!!! Two days ahead of schedule!! She is very happy to be home. She was very tired from the drive home, but happy to be back in her own bed. I am very relieved to be home too -- maybe now I can get some sleep! She said she was bored at the hospital and that's why she pushed herself to come home. :-)
Friday, December 9, 2011
Day 1 Post Op Spinal Fusion
Erinne did GREAT with the surgery and is recovering nicely in the ICU. She has an 18 inch incision on her spine. They did not have to change out any hardware that was already in place; everything looked good. Latte is keeping watch at her side. The new hospital is BEAUTIFUL and we sure have a lot more room (all the rooms are private now.)
We aren't going to do the oral surgery this time; we'll have to make a separate trip for that. Bummer.
Not sure when we are going home. It depends on how quickly Erinne is mobile again. She is wanting to get up and out of bed so I suspect soon. She is still using the IV pain medications and we will need to switch over to just oral meds.
Thank you all for your prayers and concern. It means a lot to us.
xoxoxox Suzanne & Erinne (Latte too!)
November 15, 2011
Oops! Missed a month!
Somehow I missed doing an October update! Sorry about that.
Erinne had a nerve block done on her tailbone/coccyx last Friday 11/11/11. So far she is still pain free in that area. Her spinal fusion/back surgery has been rescheduled for December 8, 2011. A couple of days post op she will have her 4 wisdom teeth, 2 incisors and the plates in her jaw removed. She'll be in the hospital 5-6 days. The bonus is that it is in the brand new children's hospital in Ann Arbor. I toured the new hospital last week and it is beautiful! I don't know if she will make it back to school before Christmas Break starts on the 23rd or not. Probably not.
She is still keeping up with her aqua therapy and loves the back pain relief it provides. Hockey is on-going too. Her team is undefeated. This past weekend she was named 2nd star of the game and got 2 assists. She was so excited (and very tired) afterwards.
First quarter of school is done and she did pretty well. She is making new friends -- many of them juniors and seniors because the freshmen seem to be very shy. Many of the kids at school are sporting an Erinne Wristband. It is so nice seeing them support her.
I'll update again just prior to surgery.
September 30, 2011
Got the keys today! We are now the proud owners of a totally wheelchair accessible house! (I must admit -- a bit scary too!) I have 4 days to get everything moved, which is a daunting task. Erinne is antsy to roast marshmallows in the family room (silly girl). Shortly we will have a track ceiling lift installed so that Erinne can easily be moved from her room to the bathroom and hallway. A whole house generator is next on the list. :) Latte has a yard and dog neighbors (she's not quite sure what to do with them). We owe a HUGE thank you to Canton Township -- THANK YOU SO MUCH!! Erinne had her hockey banquet last weekend. She was a finalist for Defenseman of the Year and won the Sportsmanship Award. I am so proud of her! She is an awesome hockey player! Her season starts tomorrow, Oct. 1st and she is geeked!
High school continues to go well for Erinne. She has just finished her 4th week and has such a wonderful group of teachers. Aqua therapy is continuing twice a week, but in a holding pattern for the moment while waiting for insurance authorization. Her days are long and taxing and she is in bed asleep pretty early. This week she sees a pain specialist about her back and coccyx. The level of pain she tolerates on a daily basis -- and still has a smile on her face -- astounds me. Spinal fusion surgery is still a go for Nov. 22.
September 16, 2011 Friday
An Official Freshman: All Grown Up!
Erinne has had 2 weeks of high school under her belt and just loves her teachers and the whole high school experience. Every staff member has gone out of their way to make her feel welcome. She has had to make all new friends, as her other friends were assigned to the 2 other high schools. Several of the juniors and seniors have taken a special liking to her. The long days are kicking her behind, especially with having aqua therapy on Monday and Wednesday after school. (Aqua therapy is the only therapy that relieves her pain.) She goes to bed mighty early! Other news: Wheelchair hockey practices have started, which makes her very happy. Games start in October. On September 24th, we've been invited to watch a University of Michigan Football Game at the Big House from a season ticket holder's suite. How cool is that??!! And then a couple of weeks after that, we are going to the Red Wing's Home Opener. Woo Hoo! Erinne's 13 yr old cat, Ernie, was diagnosed with diabetes and now requires a daily insulin injections, but still is not doing well. So sad. We just put his buddy and best friend Oscar (bone cancer) down last month. Seems like Ernie wants to join his buddy in Kitty Heaven. Newly rescued cat, Corbin, is eating me out of house and home. He's gotta be pushing 18lbs by now!
August 28, 2011
In just 8 days, Erinne starts HIGH SCHOOL!! Such exciting times! Erinne will be attending Plymouth High School on a normal schedule with regular classes. She is very excited and looking forward to meeting new friends. The principal and faculty have gone out of their way to personally welcome Erinne before school even starts, and have gone out of their way to accommodate her every need. Amy and Mary Jo, her two 1:1 RNs from middle school , will be accompanying her to high school, which is a big relief for me.
We have added a new member to our family in the past week. I volunteered to call the Humane Society for a friend who was looking for a dog and ended up finding a cat that I wasn't even looking for! Ernie has been very lonely since Oscar died and this cat just seemed to be the right fit. He was waiting 3 months at the humane society for a new home. His name is Corbin and he is a 5 yr old Manx -- a cat without a tail (that is the standard for the breed). He weighs 15 lbs (!) and looks a lot like Oscar did. He is adjusting to this crazy house well and loves Erinne to death. He is not best friends with Ernie yet, but they are getting there. He seems to like his new home, but is afraid of the bird (who acts all fierce and crazy around him with his wings extended and head feathers erect and screeches at the cat. Dumb bird!)
More about high school coming soon!
August 14, 2011
Erinne enjoyed spending the weekend with her Cousins, Rachel, Noah and Madeleine, as we celebrated my dad's 75th birthday. He doesn't act a day over 60. Her back was bothering her a bit and we need to see her orthopedic surgeon about what we need to do next. We see her doctor tomorrow. This month is jam packed with doctor appointments, getting everything done before school starts. Hard to believe she'll be a freshman in high school soon! The serial casting was a bust after casting her elbow twice. She is still swimming and doing GREAT! We are talking about casting her ankles to get them to go a little past 90*. We've had good luck before doing this. But I don't want to give up swimming, so I am not sure how we can accomplish this yet. I think it will only take 2 castings to meet our goals. Sad day..... had to put one of my cats down this month. Oscar had bone cancer. He was diagnosed last June, so we had a little bit of time with him before he passed. He was 13. My other cat, Ernie, also 13, is acting like he has diabetes and is dropping weight. I need to take him in and get treatment started. I can't put another cat down this summer! Thank goodness Latte's only problem has been sneaking too much cat food and too many extra pounds. That won't be an issue anymore with Oscar gone. Still waiting on the move.... and waiting..... and I can't have back surgery until the move is done.... did I ever say how much I hate waiting?
July 17, 2011 Sunday
We DO have a session in the swimming pool (yay!) which means Erinne will have a great time moving her legs in the water. She also has a cast on her left arm, but not because it is broken. We are doing serial casting, trying to get her left arm straightened out a bit. They will make a small cut in the cast at the crook of her arm on Monday and put a wedge in it, to straighten it even more and then cut the cast off right before swim time on Wednesday, Then after swimming, they will put a new cast on, hopefully a little straighter than the last one and repeat the process all over again, maybe for 2-3 weeks. It sure makes carrying her difficult!
July 11, 2011 Monday
It Is Taking FOREVER!!!
You've probably been checking this journal, wondering when the move and my surgery are taking place. I AM TOO! This is taking forever! I still don't have a closing date and there are still a few things not finished at our new house. Some of the stuff has to go out for bids (like siding the garage), so I don't expect them to be done (nor need they) before we move in. But other things do have to be finished (like replacing the AC, and buying a refrigerator, stove and washer/dryer. If you offered to help, believe me, I'LL BE CALLING YOU SOON!!!
Erinne really enjoyed camp, as always. This year, it rained only once. She "graduated" to the teen side of the camp (Northwood) which thrilled her to no end! She had a new "partner" this year (the person who is assigned to care for her in camp) and also met some great other partners who cared for her friends in the cabin.
Erinne starts PT and OT (therapy) today. She hasn't been in therapy for a couple of years because we can't do it during the school year and the last 4 summers I have been recovering from surgery. Now that I have help at home, she can go to PT & OT in Novi (where she started out when she was 16 mos) even after I have my surgery. She is very excited and looking forward to it. We are hoping one of the sessions can be in the therapy pool <fingers crossed>.
Speaking of help at home, we have been so blessed to have 3 outstanding women coming to our home 7 days a week to help out. It has taken me a long time to relinquish control over Erinne's care, but the great job they do with Erinne has been so worth the wait in finding them. So I'd like to send a BIG THANK YOU to Ashleigh, Kelli and Stacey for the wonderful care they give to Erinne. They have made my life so much easier and Erinne's life less 'boring'.
June 19, 2011
Last Day of Middle School: She's a High Schooler Now!
Erinne graduated from 8th grade on Friday! So hard to believe! She now is part of the high school youth group at church. I think it is so important for her to go as much as possible over the summer so that she start to make new friends and they get used to how to behave around the dog. She also played in her first All STAR Hockey game on Saturday. She was voted in by her peers. She was SOOO excited! The score ended up 10-9 in favor of her team. Next Saturday she heads out for her week at MDA Camp up in Lexington, MI. She LIVES for this camp each year! Most of her (disabled) friends are there and it is nonstop hockey, soccer and roasting marshmallows. (There are plenty of other hockey players who attend camp too, so she should have a bunch of people who want to play sports!) Erinne is not in to the nails, facial, make up and hair styles that a lot of the girls like to do up there!
While she is gone, I am going to be packing, packing packing for our move to our new home! If you are handy with putting shelves or dressers together or are a specialist in moving boxes, I would LOVE to hear from you!! I am having an epidural done on my back on Monday so that I can manage the pain better till my spinal fusion gets scheduled.
June 5, 2011
I didn't realize it has been THAT long since I posted an update for Erinne! Geesh!
Well the most important thing is Miss Erinne turned 14 YEARS OLD!! She has outlived the doctor's predictions for life expectancy by 6 years -- for that I am extremely thankful. Unfortunately, the one wish she has for her birthday was to be able to see her sister, who is 8.5 mos pregnant. Claire won't see her, because she won't see me (going on 5 yrs now.) Erinne isn't guaranteed a tomorrow and I sure wish her sister would realize that, before Claire lives a life of regrets. Claire, I know you read this and I sure wish you would allow Erinne to be part of your life again. She isn't going to have many opportunities to be an aunt. Don't take this away from her. Refuse to see me if you must, but don't take your anger out on Erinne --- please. It is not healthy for the baby either. I am asking all of my friends to please pray for Claire, that her heart be opened up, at least for her sister's sake. We didn't get to the friend Birthday Party yet (Which is usually a blow out!) because we decided to postpone it until we move. Yes, we will be moving -- and I'm looking for A LOT of help, since my back is so messed up. We are finally moving into a wheelchair accessible house!! It is beautiful and it never would have happened without Canton Township's extensive help! We owe a debt of gratitude to them, especially Township Supervisor Phil LaJoy and his incredible staff. He made Erinne's needs his #1 priority and made this dream a reality. We're hoping to move in early July and then have surgery right away. My surgery has a 3-4 month recovery period. ugh.) PS. We will finally have room to entertain and have overnight guests!
Erinne continues to have pain from her surgery/tailbone area and it is the kind of pain that will probably never go away. Fortunately, she is now on a medication that manages the pain quite well. No news on the WC front.....Blue Cross/Blue Shield-Northwood NPN are still playing games and can't believe that she needs a new chair at the 4 yr. 10 mos. time frame, instead of their minimum 5 yr mark. I can't believe people get paid to act like morons!
Erinne has visited her new high school -- Plymouth High School -- twice and each time they treated her like she was the most special visitor that every came through the school's doors. She is so happy and excited. They have made exceptional accommodations for her and I know she will do GREAT! She decided that she was already going to attend summer school, so she wouldn't fall behind. WHAT A GREAT GIRL!! Unfortunately, she won't be able to attend because of the timing of MDA Camp and she would miss too much school. I admire her for just trying to squeeze it in! Kevin has really stepped up to the plate to help take care of his sister, especially in light of my back hurting so much.We also have 2 wonderful aides, Ashleigh and Kelli, and soon to add Stacey. They help take care of Erinne when my back is bad and will majorly take over when I have surgery and am on bed rest.
Erinne's hockey team lost in the championship round (few tears there), and you probably know how the Red Wings did. So we had our hockey mourning period here for a couple of weeks. Now we are really missing it and can't wait for the pre-season to start back up in September. I'll post our new address as soon as I have a move in date. And if you want to help us move -- even if it is to just run a van load over to the new house & drop it off or put (easy) shelving units together -- please, please let me know!
I will try not to take so long for the next posting! God Blessings....
Thursday, April 28, 2011
...And Reality Steps In....
Things went really well in the hospital and Erinne went home the next day, as we thought. But pot holes and uneven pavement and construction in Michigan being the mess that it is ..... reality sets in. It is impossible for me to drive and dodge all of the mess that we call our roads and not cause Erinne pain.
She did stop by school on her 4th day post op to pick up homework (which she finished all during her spring break -- good girl!) said hi to friends and teachers an even had a short lunchtime pizza party hosted buy her favorite librarians. She lasted an hour and was ready to go home and get out of her WC and head to bed. She had a few brief outings over break to the movies and to dinner, but all in all, took it easy. Bored, bored bored was the name of the game.
So now she is back in "full swing" (school FT) and is still dealing with pretty regular pain again. Post op check is next week and I am not expecting any startling news. Now her hips seem to be giving her quite a bit of pain. We do A LOT of turning and repositioning at night. Sometimes she is awake so many times I wonder how she manages to stay away at school (cuz I am sure having a hard time staying awake here!) I know it is going to be a rough morning when she asks me to brew a strong cuppa joe and put it in her g-tube! Whoo da thought?? We need to get the new WC issues resolved because this one isn't fitting her well (try putting your hiney into something you've outgrown about 4 sizes ago!) After all, she has has 8 growth rod surgeries on her spine over the past 6 years while using the same wheelchair and the insurance says it is "too soon" to need a new chair. (Actually, it is her long femurs, long lower legs legs and sitting height that are causing the problem. C'mom, people, REALLY? REALLY? Think I am feeling my kid growth hormones?
Erinne is absolutely psyched and ready for her beloved Red Wings to continue on to round 2 of the STANLEY CUP FINALLY against the San Jose Sharks. Her WC hockey team has also advanced to their Wheeler Cup Finals. You don't have to be a Red Wing To Bring A Cup Home to Detroit! Her first game is the 30th and you can bet your booty this girl is gonna be playing!! We are EXCITED!!
April 13, 2011 Wednesday
Erinne must have decided that she didn't have time in her schedule for a long surgery or recovery! Surgery went well from the perspective that there were no complications or surprises. Her spine was quite stiff, but did move one centimeter. The disappointing part is that her pelvic bones are decidedly fused to the hardware in there that we were hoping could be taken out. We were hoping that the chronic pain she has would be relieved if some of that hardware could be replaced with other stuff. But that could not happen. So, now we wait and see. We'll wait to see if She gets any sort of pain relief from what was accomplished today. If not, then.........??
Her pain was managed well after surgery ------ so well that she was trying to talk the doctors into allowing her to go home that afternoon! She did seem to be better that she had been in previous surgeries, but my thought was, what happens when all of the pain meds wore off after we got home and she was in more pain than we could handle? So I opted to take the easy way/coward's way/conservative way out and make her stay for an overnight.
So she was sent to the ICU for close monitoring...and proceeded to eat lunch...then dinner...played Uno sitting straight up in bed...watched a movie...all the while reminding me she was perfectly able to do all of that at home. So she is sound asleep in her bed and I am wide awake at 2am in an uncomfortable chair in her room, dog tired but in too much pain of my own to sleep, and second guessing myself.
Oh well. We'll leave sometime tomorrow. If she continues to do well, maybe we will stop by school on Friday to pick up her homework and say hello to her friends and teachers and wish them a warm spring break! I think she would like that a lot.
Thank you for your prayers and concern. I felt it all the way over here!
Saturday, March 19, 201 Back in the Surgery Cycle....
Wow -- I am so far behind! But lots to tell about, so........
Today is an exciting day for Erinne. We are going to the MSU (Michigan State University for you out-of-state-ers) Veterinary School for their annual open house for students interested in veterinary careers. Animals are Erinne's passion (and hopes to make it her career) and she is so looking forward to the tour, talking with the vet students and instructors. It will be a long day, but hopefully a fun and rewarding one! I have been feeling a bit under the weather so I hope I can last as long as she does!
Erinne finally has her next surgery scheduled on her spine -- April 12th. This will be a much bigger surgery than she has had since the very first one back in 2006. (To date she has had 15 surgeries.) The lower hardware completely needs to come out and be replaced with a different type. We are hoping this will go a long way to relieving her chronic pain. This surgery is with a new surgeon, Dr Kelly Vanderhave, at U of M-Mott's. Erinne's surgeon of 10+ years is on an extended missions trip to Ghana, Africa, which necessitated us to move on to another surgeon. That was not without its own tears and anxiety as she was/is very attached to Dr. Mendelow. But, she met Dr. Vanderhave and really likes her. Dr V talked to Erinne all through the appointment, which made a big difference to Erinne. I am confident in the other key players in the process, like the anaesthesiologists, whom we have already met, when Erinne had her jaw surgery The whole pre and post op staff were great and I look forward to having it continue. The ICU folks are now the unknown factor. But one step at a time. It will be a longer recovery for her than she is used to and I hope depression doesn't rear its ugly head and complicate things.
Erinne has gone through so many surgeries that people sometimes take it (and her) for granted. ("Oh, Erinne's having another surgery. No big deal." Consequently, she frequently receives almost no visitors (except for BFF Olivia), no cards, and even something silly like a balloon. With the exception of my brother and his family (who live in KY), my family is not involved and no where to be found. For her, because of her history, each surgery is a huge risk. That is the part that she finds depressing. Like no one cares. We can't make the mistake of assuming that all will go well. Her state of mind is just as crucial as the state of her body. So I am hoping that you might find the time to drop her a card, balloon or a visit when the time is here. I'll post the information as the time draws closer. For the time being, lots and lots of prayers would be appreciated!
"Jesus said, '"I tell you the truth, when you refused to help the least of these, my brothers and sisters, you were refusing to help Me." Matthew 25:45"
February 16, 2011 Wednesday
Lacking in Updates.....Sorry!
Suck a yucky time of year, but so much to update on....Jan 26th we (Erinne and me, plus Erinne's BFF Olivia and her Mom, my BFF Cynthia), made a road trip to Ohio State University to see a heart specialist there, as well as one of the "big" SMA doctors and some of the researchers working on gene therapy and the cure for SMA. I have loooong suspected Erinne has had a heart problem, but I could never get the University of Michigan cardiac doctors to give us the time of day. "Yeah, she's fine. See you in 2 years." I learned long ago to never ignore that Momma gut instinct. I was, and am, totally dissatisfied with that answer. I learned through my SMA network that the Columbus Children's Hospital was doing some cutting edge stuff and were evaluating, testing and treating SMA kids for heart issues, and were coming up with quite a few kids who needed help. (And I have had more than one friend lose their SMA child to a previously missed or undiagnosed heart issue, which drives me to look beyond the superficial answers.) The doctors at OSU were OUTSTANDING. Of course there was a bit of good natured ribbing going on, since we are all U of M people.To no surprise of anyone, BOTH girls were found to have underlying heart issues. Olivia's resting heart rate was tachycardiac, meaning her heart was beating too fast (and it always has -- this was nothing new). She was put on a beta blocker medication and is doing MUCH better. Erinne's wasn't quite so simple. Erinne's heart rate has a high variability. Her range could be from 42 beats per minute (bpm) to 140. She also was missing or skipping heart beats, or she would have a double heart beat (also known as PVCs) on a very frequent basis. She is on a special cardiac monitor for a month to get a big picture of what that heart is doing, so we can then determine the best course of treatment. I spend a lot of time at night staring at my bedside monitor, listening/watching for those PVCs. It is mighty scary, let me tell you. I am losing a lot of sleep over this. I just want it fixed! We'll have to return to Ohio for follow up care this summer. We also need to make a visit to Madison, Wisconsin, to see the SMA pulmonary specialist again. We are still waiting for a surgical date with her orthopedic surgeon to find complete what should be the last surgery on her spine. We are also working with the maxilla-facial surgeons and her orthodontists to correct her jaw and mid-face hypoplasia issue. The elastics did not work at pulling her upper jaw forward so now we are left with a seriously major surgical procedure. (She will need blood transfusions -- type A+, so I will be looking for direct donors when the time comes.)
Gotta get some of these other issues addressed first. I won't pretend that I am not scared. It is just so much to take care of and follow up on by myself, And when we're trying to act all normal and "life goes on," we need to prepare for high school, if you can believe that! Our high school consists of a campus of 3 high schools and 6,200 students. Yep -- you heard that right! So right now we are working out the logistics, besides classes, things like a fire escape route from a 3 story building and a 400+lb chair that cannot be carried down those flights, where will bathrooming be done with privacy, extra time to get between the classes, etc. -- all normal stuff (which is nice) but all overwhelming, just the same. Oh and then there is the new wheelchair that needs to be ordered because Miss E has already outgrown this one. The many hands the paperwork must pass through and the "In" boxes it gets stuck in necessitates me calling every week to keep the ball rolling. I hope to have the new chair for the start of high school.
Erinne is still playing hockey on the weekends and has blossomed into a very tough defensive player.
My painful back adds one more iron to the fire. I have tried everything non surgical that they have asked me to do, to no avail. We meet next week to discuss surgery options. I have no earthly idea how I will manage Erinne and follow doctor's orders for recuperation. So many challenges.
I have to constantly remind myself that God is with me every step of the way and it is truly one day/one hour at a time.
Please keep us in your prayers -- thanks! xoxoxox
January 3, 2011
NOT How I Wanted To Start Off The New Year!!
Poor Erinne has food poisoning! We went out to dinner on New Year's Day and she ordered her favorite -- lobster tail. I think it was bad. She has been in great pain/agony ever since. She can't really throw up (and get rid of it -- what she needs to do -- because of a procedure that was done a long time ago to tighten the valve at the top of her stomach to help prevent reflux (nissen fundoplication) so the toxins are just sitting inside of her. If I can't get her better tomorrow then we will head in to the doctor's or the hospital. So she is officially missing the first day of school 2011. Bummer. She is already worried about getting behind.