Couldn't resist posting this. Elise's dance class sings this while waiting for the mats to be put down in the room. Amelia loves to sing along....
Tuesday, June 2, 2009
Where is Thumbkin?
Sunday, May 31, 2009
I put my gobbles on...
She might not be able to swim, but that's not stopping her from wearing her new "gobbles". Bless her heart...she's still terrified and in pain. She doesn't want to take the brace off because she feels secure wearing it. I'll be working on taking her out of it more often. Her fear is creating problems with toileting. We're trudging along.
Thursday, May 28, 2009
When I get my casts off...
"Hey Mom, I tell you something. When I get my casts off, I go to swimmin' pool, I put my gobbles on...."
Over the past couple of weeks, Amelia has been telling EVERYONE what she will be doing once she gets her casts off. She starts out like this, "Hey Mom, I tell you something..." and then proceeds with a list of things that she will be doing once that cast is off. It's very endearing until she does it four times in a row....during bedtime. I call that a ploy to put off going to bed, Steve doesn't. He encourages the conversation to the point of, let's say, delirium or is hysteria the word I'm looking for? Anyhoo, it's her thing...this is a video conversation she was having with her Auntie Candy. She didn't say, "I tell you something..." I never seem to be able to catch that part.
The past few weeks have gone relatively smooth. We got into a routine and I even managed to take the girls out to a couple of places with any mishaps. The biggest thing was all the stares we would get. I guess that HUGE purple arch between her legs and those purple casts were just too much for people to ignore. I started covering Amelia with a blanket, that helped. The only problem is the heat~the poor child was constantly hot. We've had the air cranked at our house for several weeks now (much to my dismay). We haven't been able to take Amelia outside until the sun goes does, etc. So being couped up in this house has been challenging for all of us. But we made it through it.
Ready to roll to St. Louie
Yesterday, we returned to St. Louis and the cast was removed. My sister made the drive with me and the girls. It's a tough trip to make in one day, but we did it. The took us into the exam room right on time and the cast saw quickly followed. Amelia is familiar with the saw, she's had several sets of casts removed. But this was different...that Spica was thick and it took about 20-25 minutes to get that sucker off! But hearing that final "pop" with the cast cracker, was music to my ears. Not so much for Millie! She was very nervous, scared, etc. I guess we still had one of the cleanest casts ever. I didn't think so since we had a couple of "incidents" over the past couple of weeks. But I guess that's nothing compared to what most kids do to their casts. All I can say is that I would have probably snapped if her cast smelled really bad for that amount of time. Thank goodness she was potty trained!
Very concerned right before the saw starts
Kristina, the nurse came in to check the flexibility of her foot and things went to "heck in a hand basket in a hurry". Yep, the wailing and screaming began and I was scrambling for pain meds. Since this isn't my first trip to the rodeo, I made sure I packed the "leftovers" from the surgery~just in case. So I started grabbing bottles and syringes. I gave her what I thought was some liquid oxy and she started to settle down pretty quickly.
Waiting for her new harness....
The harness fitting was rather interesting and you'll see why when you see the harness. It's a rather odd device that will hold her legs out in the position that they have been in for the past six weeks. I guess it's not so comfortable to go back to the way things were right away so this device will give her support and comfort for the next couple of weeks. She wears it 24/7 for two weeks. She can come out for baths and small range of movement exercises. We were excused with some instructions and I started to pack up all the things that found their way out of the diaper bag over the past hour. Some of those "things" was the medicine that I brought with me. As I grabbed the bottle from the counter, I happened to glance at the label. Well, I thought I gave her oxycodone for the pain, when in actuality I gave her Valium. Yep, nominate me for mother of the year. Needless to say, by the time we left the office, Amelia was singing to her hands and very mellow!
After about an hour, we were ready to hit the road again. Everyone took a potty break and Amelia spent some time at her favorite "ball roll". We loaded up the car (after about 15 minutes of rearranging, packing the wheelchair etc) and got back on the road. The girls were asleep within 10 minutes~thank the Lord!
The drive home was pretty uneventful until we got to Indianapolis. Amelia announced that she needed to go potty. I found a McDonald's and whipped "Betty" off the road for a quick stop. I ever so carefully removed Amelia from her car seat and proceeded to the bathroom. It's safe to say that I developed a certain "system" for toileting over the past six weeks. It's also safe to say that system is no longer effective and I discovered that a little too late, like when I was standing in the bathroom stall with a limp toddler in my arms trying to figure out how I was going to get her out of this harness and sit her on the toilet. With the Spica, all I had to do was remove the diaper from the outside of the cast and sit her on the potty. Wellllll....now I need to FIRST remove the harness and then the diaper and THEN sit her on the potty. I got through all of that, but then I have to deal with Amelia being terrified and clinging to me for dear life. So much so, that I had to ask her to loosen her grip so I could breath. It goes without saying, the potty break was a complete disaster and we returned to the vehicle without Amelia relieving herself. I promptly gave her some pain meds and started back on the road.
Once we got home, unpacked everything and got settled. I carried Amelia upstairs to get ready for bed. It was too late to go through all the new care instructions with Steve, so we brushed our teeth and went to bed. Giggsey was very curious about Amelia's new apparatus. He was determined to protect her as soon as she came home. I was afraid he would crawl into bed with her for awhile.
Giggs, keeping watch...
Sleeping went well. Amelia woke up at 6:15 and I gave her Tylenol. After about an hour, I got her up and decided to give her a much needed bath. I knew it would be challenging and it was. She is very scared coming in and out of the harness. She doesn't want to be moved at all and cries whenever I try to move her legs and feet at all. I praying that diminishes as she becomes accustomed to not being in the Spica.
All the New Stuff she will wear for the next two weeks
Still has big smiles for Mama
She is now sleeping on the sofa. She has no interest in food right now and she does weigh a big whopping 27 lbs. She is light as a feather without her cast and harness. She feels so tiny and frail in my arms. I'll be glad when my Tiger returns. I thought she would be rearin' to go, but I guess that will be a little while coming. The next few days will be rather long since I can't see taking her out anywhere. It's like starting all over. Oh well, it's rainy today anyway and the house could use some work. There's always a bright side to everything. Whenever I leave that doctors office, I always stop and thank the Lord for the many blessings in my life and for the health of my children. Millie may seem to have so much going on, but I'd rather have this than some of the other things I witness there. You know what they say, everyone throws their troubles into a pile and you pull any one problem back out of that pile. You'll be glad to take your own problem back than to have to deal with someone else's problem. Such a very true statement!
Off to tend to the chicks and the hen house....until later...
Friday, May 8, 2009
Millie's post op check up
Anyway, I released control and let Steve take Millie without me! I know, people are fainting and gasping for breathe all over the country! Yes, it is hard to believe that I let this happen. Especially after the night time diaper fiasco (a story for another time). I did this for two reasons. #1~Dear Daughter Number One had a special Mother's Day Program at her school on that exact day that I really needed to be at. I'm so very glad that I didn't miss it. I forgot my video camera, but I'm going to touch base with some other mothers to see if they have Elise on video. She didn't disappoint, "Tacky" was in rare form! #2~Dear Daughter Number Two has taken on a bit of a "tude" lately~not using her manners, throwing her food and toys and just being very nasty. Sleep has been lousy and I've resorted to moving Amelia to the spare bedroom so Elise can get a peaceful nights sleep. I'm happy to say that Millie is coming around to my way of thinking, but it's been ugly my friends. I have explained to her on several occasions that her condition does not give her a license to be rude and mean to everyone around her. I think she got the message.
So back to the important part~the appointment. Steve said that Dr. Dobbs is thrilled with Millies hips and the x-rays look great. We win the prize for the cleanest cast ever and they ranted and raved about how great her cast looked. I'm still scratching my head over that because I haven't done anything except for what they told me. But, whatever, I'll take the compliment.
THE CAST COMES OFF ON MAY 27TH!!!! I'm beside myself with glee! Yes, it comes off and she will have to wear a harness for a couple of weeks, but the cast is coming off at the six week mark, not seven weeks! I'm thrilled. I have to get the details on the harness, but I think it can be removed for bathing and hopefully she'll be able to get into the swimming pool for therapy!
Millie is thrilled and knows that we have reached the half-way point of living in Spicaville! We are on the down hill swing~yahoo!
Now if I can just get my teenager to quit stealing the wheelchair and ripping through the house in it~Millie really doesn't like sharing it with him :-)
Friday, May 1, 2009
Tummy Time....
If you know anything about people that are wheelchair bound or in bed too long, you know all about the possibilities of skins sores, bed sores, etc.
Amelia spends a great deal of time on her bottom or back. The potential for skin breakdown is pretty high. If we keep her skin dry (thank goodness she's potty trained) and rotate her position, we should be able to keep her from getting any sores. She did get one while we were in the hospital, but it is all healed now.
Putting her on her tummy is a challenge thanks to the St. Louie Arch. But we manage to do so a couple of times a day for about 30 minutes each time. We pile up pillows on the floor or on the sofa and she watches a movie. Thirty minutes is about all she can stand at one time. The pics tell the story!
Tuesday, April 28, 2009
It's a good thing....
we are finished with visits from the social worker. No too sure how this method for securing Millie into her favorite "big girl" chair would go over.
Monday, April 27, 2009
Spicaville~Day 13
So here we are, 13 days in Spicaville and this is what I know:
1) Millie is losing weight. She weighs 30 pounds WITH the cast and she weighed 28 pounds at her 3 year appointment on 3/25/08. You can't tell this mother that cast only weighs 2 pounds~no sirree!
2) Can't get her outside in hot weather, which we have had in the 'Nati over the weekend. She gets way too hot and sweats way too much! I'm praying the weather cools off and we aren't struggling with the "I wanna go outside" tantrums.
3) Bathing and hair washing isn't so bad. We seem to have it down to a nice routine. Her cast is staying clean and dry~YOORAH!
4) Millies appetite is way off (see #1). We were warned that she would need to eat frequent, small meals. I could understand that if the cast was tight, but I can fit hand hands all the way through the cast now. So, I know it is not too tight. Looks like I'm going to have to start finding some high calorie things for her to ear~Lucky Girl!
5) She's sitting up straighter in the wheelchair which makes it easier to put her at the regular kitchen table. I have her strapped in with bright green luggage straps (thanks Joan!). She looks very colorful!
6) We are off the meds except for a little bit of Tylenol when she goes to bed at night. She's sleeping very well too~for that I am very thankful!
7) Millie's frustration level gets really bad when other kids are running around. This makes for difficult socializing with Elise and her friends. Still trying to sort that issue out.
8) Finally, I'd like to say we have a nice rhythm going here but the second I do that, it will all fall apart. So for now I will say we are doing pretty well.
Thanks to all my friends that are feeding us! It really does help~you just can't imagine how much I appreciate it.
Monday, April 20, 2009
Spicaville~Day 6
Saturday, April 18, 2009
The real test....
As I enjoy a most beautiful glass of "Four Sisters" in the kitchen of my home, I gaze upon my two beautiful daughters as they compete for attention and realize the real test is now beginning. Gone is the safety and security of the hospital womb~where our only requirement was to be available for the doctors, therapists and nurses whenever they would call. Life has kicked back in and all that entails.
The ride home was uneventful except for the pit stop at the local Walgreen's to be sure we had pain meds for the 6 hour drive home. Pain management is the key right now and Amelia is scheduled for pain meds every 4 hours. She got a dose right before we left so I knew that I needed to give her another dose sometime during the drive home. The nurses told me that I could move it out to six hours, but I respectfully declined that offer and said I preferred the four hour interval. After standing around for about 45 minutes in St. Louis Walgreen's, we hit the road.
Millie was a champ and even slept for over two hours, a first for her in the car at anytime during any trip. I finally reached back to make sure she was still breathing. Upon our arrival, Elise glanced up from her bowl of ice cream and just glanced in my direction. She then proceeded to devour her before dinner treat. No hi, no nothing! Can you feel what I'm thinking!?!?
Then the competition began....grabbing of the toys and no sharing of new toys...blah blah blah. I bring in the wheelchair and Elise thinks she is going to push it around the house like she does Mamaw's wheelchair. Chaos reigns my friends. I was thankful the bottle had a screw on top and I didn't have to mess with a cork!
I finally got Millie settled in her new, red bean bag and she sat there for a bit. She eventually asked for the wheelchair and I think she prefers the height it puts her at. Giggsey was licking her toes and I don't think she cared for that. Again, chaos!
Let the test begin.....I'm off to the wine cave!
Bustin' Out
Friday, April 17, 2009
Last night in St. Louie?????
It was positively GORGEOUS in St. Louis today. I was chompin' at the bit to get outside. So as soon as Millie had her breakfast and breathing treatment, we loaded up and moved 'em out.
Transferring her to the wheelchair is a bit of a challenge but not too terribly difficult. She's still rather light~relatively speaking, so moving her isn't too bad. She's just very bulky! The biggest thing is the element of fear that crosses her face whenever I pick her up. I know this will pass as she heals more, but it still is something we have to be sensitive about.
As you can see the pictures, it was sunny on the 8th floor rooftop garden. But was it glorious, you betcha! The spring flowers were in full bloom and the air was so warm. I could have sat for hours in the swing, letting the sun warm my soul. I did pick Millie up and hold her for a bit in the swing. She was rather apprehensive, but she soon feel fast asleep as we gently swayed to and fro. It was so lovely.
After our little stroll, I headed over to Panera for a much craved sandwich and then we had ourselves a nice little nap. It's the first real nap either one of us have taken. I crawled into bed with her and we slept for almost two hours. It was bliss. I must have been tired because I don't normally sleep that close to anyone, let alone sleeping in a twin bed with a three year old in a spica cast. Millie clung to my arm the entire time.
As you can see from the photo, she's got her arms behind her head in total relaxation mode. She's back to her old self, chit chatting with everyone and singing her little songs. She even said she wanted to go home today.
Evening in the Garden~Self-Portrait
Oh where is my toothbrush????
Do you know the Veggie Tales song, "Where is my hairbrush?"? Well, Amelia has modified it to sing "toothbrush" instead of hairbrush. Yesterday was a day of searching for comfort and safety for Amelia. She clung to my finger almost constantly all afternoon. If someone walked into the room, she said, "hold my hand!!!". After awhile, I couldn't stand or stretch any longer for her to cling to my finger. She received a book yesterday afternoon and clung to that with one hand. After I brushed her teeth, she decided to cling to the toothbrush with the other. So she slept, all night I might add, holding a Diego book in one hand and a toothbrush in the other. Bizarro~that's all I can say.
As you can see, she's much perkier this morning. She had a great night, no fevers~Praise God! She's resting comfortably and for that I am thankful. The night nurses were amazing~didn't even hear them in the room. Maybe they read my blog~they knew my plans and decided to steer clear? Who knows! I don't care, it was bliss.
Thursday, April 16, 2009
Thursday evening
Another eventful and interesting day her in St. Louie! Fortunately, we don't have Nurse Cratchet tonight~good thing~I think I would have had words with her tonight. Or maybe I could take her down with a one-legged shot for (2)~put her in a cradle for some back points and then "pretend" I can't hold it and let her go, then I could throw her in a head & arm for another take down and pin her for the win! YEA! Or maybe not~maybe I could just ream her out, like I'm really good at!
Anyhoo, I'm back from my dream world now. We put Millie in a wheel chair today and she did great. But when we moved her back to the bed, all the swelling started up again~UGH! Poor little butterball! First the right side started to swell and then the left side followed. Then the fever started spiking again. But the good thing was that we had a visitor today, Nel the Dalmatian! Millie was thrilled. She kept yelling, "I like Giggsey!" Well, Giggsey is our dog at home and Millie does love him to pieces. It was so lovely to see a dog. Nel was so docile, not like our Giggs! But nice just the same.
The parade of doctors, nurses, therapists, etc started and didn't seem to stop until around 5:30 p.m. The epidural was removed around noon and she's been on oral pain meds since then. We're staying on top of the pain and keeping the meds in her. She's a little shaky, but all in all, she's doing pretty well. There was a pressure sore on her back and we have to make sure she stays off of that now~so she's always laying to one side.
The temp keeps spiking, but we don't know why. They took another chest x-ray and it looks the same as yesterday. It's too early for there to be an infection. So they are running some cultures and we will know more tomorrow. Breathing treatments have been moved to every six hours~thank goodness. At least I won't have to square off with a nurse tonight about getting a treatment at 2 in the morning :-).
We have a nice, new wheelchair that was delivered to our room today. These folks don't waste anytime. I did fold and request a handicap sticker for my car. I hate doing that, but I think I'm going to need it. So we are getting that too. The only piece of equipment we are waiting on is the car seat. I'm hoping to see that tomorrow.
She's resting nicely this evening. One more breathing treatment before lights out. She wants to be holding my hand constantly and it's a bit uncomfortable. So I've passed off a toothbrush to her to give my arm a bit of a break. Her eyes are almost closed and she is totally fighting going to sleep.Praying that her night is restful since she will be off the epidural and praying we can keep the temperature down!
Day 3 morning update....
Last night was a little rough as you read from the previous post. Fortunately, the Valium calmed her down and she was able to rest.
The swelling was making it difficult for the Pain Management Team to see the epidural site. The following photos are of poor little Millie on her tummy, if you will, while they are trying to check the epidural.
Nurse Becky trying to calm Millie
Breakfast was a little better and she had some milk too. The swelling is down dramatically today, but the cast is still tight. Dr. Dobbs nurse, Kristina and his office assistant, Mary stopped by. I love these two woman, they are amazing and awesome! Kristina concurred that the cast is tight and said she will talk to Dr. Dobbs and bring him back up today. Like I said, they are amazing.
Wednesday, April 15, 2009
Evening update...
So this afternoon and tonight has been quite a bit more eventful.
Amelia ended up getting a blood transfusion. We knew this could be a possibility, but was hoping it would not happen. But her counts were low, she was still running a temp and she's swollen and look like a Sumo wrestler. Her eyes are mere slits in her face :-). We watched a movie together and she liked that. I wish I could hold her but it's rather awkward right now with the cast, tubing etc. Hopefully, they'll remove some things tomorrow and we can get a little closer.
The epidural is hidden under her cast which is very tight from the swelling. The pain management team is having a time trying to determine if the site is o.k. since they can't see it because of the cast. Three doctors were in her room this evening around 6 p.m. trying to decide whether to cut the cast and relieve some of the pressure on her lungs so she could breath a bit easier. After much debate and determining the best places to cut the cast, one of the doctors left to get the cast saw. When he returned, he informed the other two doctors that he phoned Dr. Dobbs and Dobbs said NOT to cut the cast. The look on the other doctor's face was priceless, especially when he said, "You called Dobbs?" "I was just gonna cut the cast and take the heat." I could literally smell the testosterone flowing in the room. Hopefully the swelling will be down and we won't have to worry about cutting the cast. But watching that exchange was worth a thousand dollars~I was looking for the popcorn and considering following them down the hall and see what transpired between them~I'm thinking "Grey's Anatomy" type of sage. O.K., I watch too much TV~sorry!
Her behavior is rather erratic this evening. She is very jerky, probably from muscle spasms. Sleep is not coming easy for her either. I asked for something to relax her, but they have not brought her anything. She has also tried to pluck her IV out of her hand~that wasn't a pretty moment for either one of us.
Praying that tomorrow the swelling is down, the temp stays down and we can get off this floor. Leaving the floor means taking out the epidural~that means pain management will change. Lots to think about there. She wants me to sleep with her, but that's not possible right now. She breaks my heart when she says, "I get down now?"
Well, our good neighbor, Valium, is on the way. The nurse told me to get in bed with her until she settles down. This outta be cozy!!!! Wish I could send a pic, but it's just me and her!
Good night!