July 2, 1998
Well, with all the smoke down here in Florida, Valkyries doctor has decided that a portable oxygen tank is necessary for her to be able to go outside. We have had to keep her inside with the air conditioning running since April when the fires in Mexico started. Poor kid is going stir crazy... she can't go play on the swings, we can't go swimming or take her to Disney so she can see her beloved Pooh Bear.
She still weighs 34 pounds, and her doctor has given her periactin to help with her sinuses and also to help increase her appetite. So far it isn't helping with the weight gain, but it is helping with the chronic sinusitis and post nasal drip :o)
I can't help but wonder as she approaches her 6th Birthday how much longer we will have the wonder of her presence. With all these new problems and restrictions I wonder if things will ever get better, and if she will live to graduate high school and fall in love. I guess only the Good Lord above knows the answer to that, and I pray that He will allow her to continue to be the shining light in so many lives. Especially mine.
July 9th, 1998
Well, here it is.. the day before Valkyrie turns 6. The oxygen has been a true blessing and Valkyries appetite and energy level has increased dramatically. She hasn't gained anything yet... but i'm sure that it will come. Her doctor told us to feed her ANYTHING that she will eat... be it cookies, cake candy ANYTHING. We are giving her Bugs Bunny Vitamins and basically anything else we can get into her. So far the main diet seems to consist of chocolate *grin* Chocolate chip cookies, chocolate pie and coco-puffs *giggle* As my mom used to say... "Any port in a storm will do" so I guess this is the port we are at now. The main concern is her weight... she is 6 years old, 44 inches tall and weighs 24 pounds. We believe that the low weight is contributing to her weak immune system... mainly because she doesn't have enough stored fat to draw energy from when she gets feeling icky, and therefore doesn't have the strength to fight with.
Hopefully with the rain that Florida has been getting, the smoke will begin to decrease and finally stop its constant drain on her system. I hope that it mellows out too because unfortunatly there aren't any charities that will help with paying the $300 a month electric bill because we have to run the Air Conditioner so much. I get alot of "We sympathise with your plight ma'am but unfortunatly we do not have the funds available to assist you". *sigh* I just don't know how we can ever get out of this hole... but we cannot risk her health, so we just live with the huge bills and the constant payment arrangements. Wouldn't it be wonderful if ordinary people like us could win the lottery? I know one thing that I would do for sure... and that is set up an aid program for parents like us who HAVE to have certain things but just can't manage to pay the bills.
Happy Birthday My Precious Little one.... and Thank You Lord for giving us another year with her.
August 2nd, 1998
Well, the smoke is subsiding... but Valkyrie is still having a tough time because of the horrible humidity. Its hard for me to go outside for very long without having to come back inside to cool off. The lawn hasn't been mowed in awhile because its just too hot to do it. Heat indexes of 115 are really hard to deal with, but Valkyrie is finding other things to do inside like playing video games and watching LOTS of blues clues, Little Bear and David the Gnome. Then of course there is our large selection of Disney videos that she has watched and watched and watched some more *grin* I think I know every word of Pinocchio and Pooh's Valentines Day *giggle* but I don't mind... at least she is happy. Hopefully soon the weather will break and her Asthma will mellow enough for her to go play outside. As it stands now, if we want to take her swimming, the portable oxygen tank her doctor gave us has to come along. I swear that thing is bigger than she is and i'm sure it weighs more, but all in all she doesn't really care much. She just pulls it along like its her best friend. We got some Pooh Stickers and put them all over the ugly green canister so it doesn't look so bad :o)
We took her to Disney World for a break and to get out of the house that has held her prisoner for so long and she really had a blast. I think she enjoyed this trip more than some of her others just because she hasn't been out of the house too much and this was her chance to get out and really enjoy life. We did get alot of really strange looks, as her oxygen tank was tied to her stroller and looked really weird, but it wasn't too bad. I did have a few people stop me and ask "Whats wrong with her?" *sigh* and when I said she has severe asthma they just kinda rolled thier eyes and said "I never knew that asthmatics needed oxygen". I guess people just think that people with asthma can stop thier attacks by just using inhalers... boy do they have alot to learn!
September 8th, 1998
Well, this update is a bit late because Valkyrie had a bit of a setback. We were sitting in the living room watching TV when at about 8 pm Valkyrie came in from chasing her brother around the house and she told me she had a headache. I gave her some tylenol and told her to sit down and relax for a bit. Well that lasted all of about 5 minutes and she was off playing video games again. At about 9 pm she came back in and said her throat hurt, so we hooked her up for a breathing treatment. It was about an hour early, but sometimes you have to change these things according to needs. That went well and she went back to playing her video games again. Well at about 10pm she came back out and said that she didn't feel good, so I picked her up and man did I get surprised. When I picked her up she was HOT and I do mean HOT! I sent hubby for the thermometer and started asking Valkyrie what hurt. She pointed to her ears, so I figured we had an ear infection on our hands... along with probably something else. Hubby gave me the thermometer and when I took her temperature I asked her what else hurt. Shee pointed to her back and thats when I knew we had a real problem here because she'd NEVER said that before. When I read the thermometer I almost fell out of the chair... it read 104.8. That is when I picked her up and drove her to the enarest Emergency Room. I phoned her doctor before I left and let her know that we were on our way and why.
By the time we got set to go Valkyrie was too weak to sit up in the chair, and could barely hold on to her beloved Pooh Blanket. When we got to the E.R. I was greeted by a nurse.... and began rattling off her symptoms and history as well as what had transpiredin the last 2 hours. She refused to believe that she had pneumonia because pneumonia is accompanied by coughing which she had done none of. But heck she's had pneumonia 15 times before this and had never coughed once so I wasn't expecting her to. But this nurse seemed convinced that it was just an ear infection and was nothing to worry about... until they took her temperature. Even with the Tylenol already in her system it had gone from 104.8 at my house to 105.6 in the 20 minutes it took us to get her to the hospital.
Well then the nurse seemed to agree that there was something else besides an ear infection going on here and she brought us straight to the back so the doctor could take a peek. Well, I told him of her history and demanded both a lateral and side view chest x-ray with contrast. He looked at me like I was insane, but agreed anyway when I started spitting out all this medical stuff at him. I think he was scared to be honest *giggle*. First they did regular lateral and side views, then did the contrast ones. Just as I figured the regular x-rays showed nothing... BUT the contrast ones DID! Both lungs showed shadows... and her right lung was almost completely full. The doctor almost fell over in disbelief. At this point Valkyrie was so weak she couldn't hold her head up... and dark circles had begun forming under her eyes. It was 11:30 now... and hour and a half since I had taken her temperature and an hour since we had arrived at the hospital.
We took her back to the room, where I told them if they wanted to get an IV in her they had BETTER do it NOW or they wouldn't get another chance. The doctor decided not to fight me on this and orderedone right away. The technician came into the room holding that box and Valkyrie stuck her arm out. The tech couldn't believe it. He tried once and failed and Valkyrie didn't even whimper. When he went to do it the second time, Valkyrie gave him a kiss and told him "you get it dis time I pwomise", and he did. She was such a trooper, he gave her the pooh clip on he had on his box... and he asked me how many times she'd had to go through this... when I told him this was the 18th time he almost cried. He said I was right when I said she was dehydrating fst and that they needed to hurry. There almost weren't any good veins left.
The doctor came back in and asked me how I knew so much about medicine and reading x-rays... I told him "When you have a little one who has been sick as much as she has you just KNOW." And he agreed, and said that he wished he had more parents like me who could tell him everything... it seems that he has had alot of parents come in who just don't know.. or maybe they don't care to know.
Valkyrie was admitted, and stayed for a week before Dr. D decided to discharge her. This was the first time Valkyrie had been in the hospital since we moved to Florida almost 2 years ago, so we are definatly improving :o)
October 4th, 1998
Well Valkyrie has done well in recovering from this last bout of pneumonia. She has a few new medications... Singulair which is a preventitive and RhinoTann for her constant sinusitis. So that brings it up to 4 medications that she is on right now: Proventil, Intal, Singulair and RhinoTann. We had taken her off the Claritin because it gave her such horrible headaches. That is where the RhinoTann came in again. It seems to be working well, so we are gonna stick with it.
Valkyrie is really enjoying being homeschooled, although she misses having her friends in school, but we go and see them during recess. We are using the Learning Math with Pooh CD Roms and also the Ready for Reading with Pooh CD along with some extra books that I have found along the way. She can count to 30 and is doing really well at beginning sounds and matching. Her speech is improving dramatically as she tries to imitate what Pooh, Piglet, Tigger and Eeyore are saying and is loving interacting with her favorite critters.
The outlook is good, although there is very little hope that she will ever outgrow this severe asthma. The multiple pneumonias and upper respiratory infections have damaged her lungs, so this is going to be something that she must learn to deal with for the rest of her life. But at least she still HAS a life, and for that we are forever grateful.
November 10th, 1998
So far the month is going along well with only a few minor problems. The neighbors forgot to warn us that they were going to be burning some leaves and that caused Valkyrie to go into another bad attack. We managed to stop it before it got really bad, but when we took her back to Doctor DeZayas, she gave us another portable oxygen tank just for such emergencies. It seems that no matter how hard we try to keep her safe something always comes up. But God has given us the strength to deal with whatever comes our way, and He is always here should we need Him.
We went to Cypress Gardens for Halloween with Anika, Christopher and Daddy, and we brought Heather and Justin and thier mom Angie who are our neighbors too. Valkyrie wore a leopard costume that my mom had made for me, and while its alot warmer down here than where I grew up at in NY poor little peanut was one HOT kitty! But we got to see a whole bunch of lights, and got alot of candy, and had alot of fun seeing all the shows and stuff. She didn't like the Haunted Forest too much and she crawled up in mommys lap in the wheelchair to gain some safety from the ghouls and goblins. She really enjoyed going up on the Sky Tower and seeing all of Winter Haven in all of its lights and beauty and even yelled "HAPPY HALLOWEEN" to all those who were standing below. The Alien on the ship gave her a bit of a fright but it didn't last long after he handed her a bottle of bubbles. We did learn one very important thing however... Valkyrie needs to be in her stroller when we go to do things like that because all that walking wears her out really fast.
She still weighs 34 pounds, but has grown to 43 inches! She's growing up but not out. Dr. D said that that is the way its going to be for awhile until she gets bigger and can fight off the attacks better... I just wonder WHEN she will get bigger.
All in all we've had a really great month and Valkyrie has been having alot of fun... and after all... isn't that what being a kid is all about?
December 26th, 1998
Hi again! I'm so sorry about the delay in updating for this month, but things have gotten really crazy around here. Anika and Christopher both came home with bugs that they caught in school and were sick for about 2 weeks. Anika got strep throat and Chris wound up with bronchitis and they both had fevers that refused to go away. The Doctor said that it was a bug that was going around, and in fact literally 1/2 of the kids in their school was out with it too. They even had to send some kids home because they didn't have enough substitute teachers to cover for all the sick teachers. It was a real mess!
Just when Anika and Chris started to get better, Valkyrie got it... or so I thought. She started with the low grade fever (about 101) and the aches and pains. But then things went down hill FAST! Her fever spiked at about 104 and she began to complain of headaches and really bad neck pain. We took her to the ER one a saturday night, and she was beginning to get dehydrated. They drew some blood, and couldn't find anything wrong other than an upper respiratory infection. This mommy knew there was something else going on. Well, we brought her home, and on Sunday her fever went up to 105 and all she did was sleep. I kept putting her into a luke warm bath and giving her advil in hopes that we could break the fever... but when Daddy got home she wasn't any better. In fact her neck hurt so bad she couldn't lift her head off the pillow, and she couldn't stand to have the lights on in the room. So again I called the Doctor on call, and he said to take her up to Orlando Regional Medical Center for a spinal tap as it sounded like she had spinal menangitis.
Well with fear in my heart and Ron by my side, we packed up some things "just in case" and headed for ORMC with Grammy watching the two others.
Valkyrie was such a trooper and I was SO proud of her. ORMC has a special pediatric only Emergency Room which is staffed with pediatricians and pediatric nurses and they are supposed to be the best hospital around here, so I knew she was in good hands. They did thier preliminary exam and ordered a whole bunch of tests, including the spinal tap. I knew it was coming but it really didn't take my fear away. When they put the IV in and drew her blood she didn't make a sound... no tears no cry nothing. The nurse said that she had never had a better patient, and that it was especially remarkable because she is so young.
Valkyrie looked at the nurse and said "I've had wotsa dese tings... its no pwobwem anymore." (I've had lotsa these things and its no problem anymore). The nurse looked at her and gave her a big hug and then asked me why she was so used to this, and I filled her in on her history and she almost started to cry. She couldn't imagine who such a sweet little girl could have to be so sick.
When it came time for the spinal tap, Valkyrie showed her true colors... she was an angel. She didn't cry (she whimpered a little bit) and she held perfectly still. So still in fact that they had to keep asking her if she was ok because they thought she had passed out on them! When it was all done, she looked up at the ceiling and told Santa that she definatly deserved a new Pooh and some tigger slippers for that one cause it HURT! Well, that brought smiles and giggles to everyone in the room, and to the other nurses too. She had become the ER pet.
One of the nurses brought her a beanie pooh and another brought her a beanie tigger... that had belonged to them. They had to let her know how special she was and how proud of her they were.
When the results came back, it brought a HUGE sigh of relief, as the results were negative for menangitis! We still had no idea what was wrong but at least the curtain of fear was gone.... it wasn't as bad as we had thought. They gave her two big bags of IV solution and a mega dose of Ampicillin and she had begun to perk up just a bit, so we brought her home.
We took her to the doctor the next morning and she was back to bouncing and smiling and was looking MUCH better than the night before. Dr. D said that it was most likely the bug that her brother and sister brought home, but it affected her so much worse because her immune system is so bad. I explained her symptoms and she said that had she been brought to the office she would have ordered a spinal tap too because she was indeed showing all the signs of spinal menangitis. And she gave Valkyrie a HUGE hug and told her how proud she was of her for being so brave, and that she would put in a special request to Santa for that Pooh and the slippers.
Christmas was wonderful. Valkyrie got a singing Pooh and her tigger slippers and alot more. Santa even wrote her a letter telling her how proud he is of her for being such a good girl for the doctors! She was tickled pink. We played with her pooh, and her new Candy Land game, and watched her new Pooh movie about 4 times *grin*. It was definatly a wonderful day.
I'm hoping that we can have many more wonderful Christmases like this one. For awhile there I was wondering if we might have a Christmas without her, but thank God, he decided to let us keep her for another one.