Adoption Interview

Adoption Bloggers Interview Project 2012
Showing posts with label cystic fibrosis. Show all posts
Showing posts with label cystic fibrosis. Show all posts

Saturday, June 06, 2009

Girly Girl

Anyone who knows me in real life knows that I am NOT a girly girl. I've always been a bit of a tom boy, more into horses and books than dressing up, wearing make-up, or pretending to be a princess. In spite of all that, somehow Hannah has managed to catch Disney Princess and ballerina fever. She pines over nail polish, tutus, tiaras, high heels, and princess dresses. I don't know how it happened! I've tried for a few months to hold back the tide of girliness threatening to overwhelm our home, but it's no use. When Hannah started performing ballet moves in the living room and informed me she wanted a ballerina birthday party for her 3rd birthday I just gave up. It's pointless to fight it and obviously it brings her great joy. The huge smile on her face as she twirls around the room and the excitement in her voice as she asks to be read a princess story is proof enough. How can I deny her? Yesterday she picked out the cake she wants for her birthday. If you've been following my blog for awhile you know that I've made Hannah's other two cakes (as well as one for my friend's little girl), but these have all been fairly simple and only required basic stars and a shaped cake pan. The cake Hannah's picked will put my decorating skills to the test. It's a ballerina teddy bear and it's a 3-D cake with a lace tutu and everything! There's not a single star on the cake (really the only tip I'm any good at using!) so this should be interesting. Hannah and I went and bought the cake pan (as well as some other goodies for the party which I'll elaborate on later) today so that I can do a practice run with plenty of time for a change of plans if it become apparent that this cake is out of my league! I'll keep you posted on how it turns out, although if it's bad don't expect to see a picture! Besides the cake supplies we also picked up some ballerina (and princess) dress up items and party props to use at the big event. We came home with 2 tutus, a princess dress, 2 tiaras, 3 pairs of princess shoes and a pair of ballet slippers, a purse (a princess has to shop!), and a whole slew of ballerina wands. We also picked up a few foam soldier swords (think the Nutcracker) for the boys who resist wands and tutus! The funny thing is that so far most of the kids Hannah's age she's met that might be on the guest list for this party are boys! I'm not sure what they will think of a ballerina party (maybe at 2 1/2 and 3 you don't care?), but that's what we're doing. Anyone with any ideas for making the ballerina party more boy friendly feel free to leave me a comment. After lunch Hannah pulled out her new tutu, wand, and tiara and twirled and whirled around the living room to George Winston's tribute to Vince Guaraldi's Peanut's music which was the closest I could come to ballet music (Linus and Lucy is the name of the CD in case you are interested). She looked so happy and even graced us with a bit of real interpretive dance by sitting down on the floor and putting her head in her lap as a sad piece of music ended. It really made me smile to see her so happy even if it was in a tutu and waving a princess wand.

Besides princess mania, Hannah's also been really into drawing lately. She's finally started to draw things that have purposeful strokes and sometimes they are even fairly recognizable. She went from no interest at all in drawing people to overnight drawing the classic portrait of a head with arms and legs sprouting from it! I was actually pretty impressed since my people drawing skills aren't much beyond that (think stick figures!). Her coloring is getting much more precise and she focuses on a page for much longer. I've no clue where she should actually be developmentally in the drawing and coloring areas at her age so she may be way behind for all I know, but if that's the case don't burst my bubble of parental pride just yet. :)

Another skill that has also made a huge leap as she inches closer to the big 3 is throwing and catching a ball. Her gross motor skills are improving by leaps and bounds so now she can actually make adjustments as the ball is coming towards her and catch it much of the time as long as it's not a wild throw. Her balancing and climbing is getting quite good and she can finally alternate feet on the steps now without being prompted and does this about 50% of the time she goes up and down them. Her running is still quite odd and she falls down a lot when she runs, but it doesn't seem to bother her too much unless she skins her knees (although that's been fairly often lately since it's been warm enough for shorts). Trike riding is still an obstacle. For awhile I thought she had finally cracked the code, but alas I fear I was premature. Pedalling that darn tricycle has been the source of many tantrums lately and now she doesn't even want to try anymore.


Oh, I almost forgot! Hannah's cystic fibrosis test came back normal!!!!! Praise Jesus! The testing was fairly straight forward although Hannah screamed for 5 minutes straight as I held her while the electric current (mild I might add, like the kind they use in physical therapy) activated the sweating medicine. The tech told her it would feel tingly like when your arm goes to sleep and it was then that I knew we were in trouble. For some reason, the sensation of pins and needles for Hannah is experienced as intense pain. She shrieks and cries every single time until it goes away. You would think someone was cutting off one of her limbs. Imagine the look on her face when she realized that after the tech finished doing it to one arm that he was going to do it on her other arm!?! The poor little thing was very brave though. She bit her lip, sat on my lap, cried for 2 minutes and then silently sobbed for the other 3.

Night potty training is going pretty well. We've had a few dry naps as well as 2 dry nights in a row in our first week of trying. Unfortunately on a few of the nights she's had only one accident it's been at 5am and she has not gone back to sleep on those days. That's made for some really cranky days since she also has not napped. I'm cautiously optimistic that she'll be able to figure this out and be able to wake herself up when she needs to pee eventually (like before she's in kindergarten) even if that does mean that we have a lot of really early mornings.

Sunday, May 31, 2009

Moved In


We are finally all moved into our new house. We have been for about a month now, but we've been so busy trying to get things clean and into a livable state as well as traveling back to Indiana for a wedding that I haven't had time to post. The move went about as smoothly as I could have hoped. Hannah really likes her new room and enjoys spending time in there. Since we have no other space for her toys, they are all in her room which means that she doesn't always have a nice orderly space, but that's ok with me (mostly). Hannah probably has the coolest room in the house. The paint color and wainscoting are adorable and we've turned her closet into a little clubhouse since it's so big. One thing that I don't like about the new house is that it's impossible to keep clean. Between frequent walks down to the beach (what a shame huh?) and a driveway that is essentially completely sand, it is next to impossible to keep sand out of the house. There's no entryway, porch, or mudroom to easily remove your shoes before you enter the main living space and because all the floors on the main level are either tile or wood the sand always ends up kicked all over the house and stuck to the bottom of your feet even if the shoes stay right by the door. I would welcome any tips on sand control from those of you that have lived on a coast near sand for longer than I have because if I don't do something to contain this sand soon I just might go crazy. Other than that, the only part that has been hard to get used to is the fact that the house is smaller than what we moved from so we have too much stuff. We downsized quite a bit before we moved, but apparently not enough. We ended up having to even get rid of our mattress foundation and the guest bed mattress and box spring because the stairs are too tight to get them up to the bedrooms! We don't have a king bed either. We were only trying to get a queen up there, but these New England houses have narrow and oddly shaped and placed staircases.

Besides moving, a lot of stuff has been happening here at the Spontak house. Hannah started a social skills group through our early intervention agency and she has been doing fantastic with it. I've seen so much improvement in her socially that it's amazing. She's still pretty overwhelmed by all the activity and kids, but at least she will speak when spoken to by an adult there (she wouldn't really do that at preschool in Indiana unless the words were pried out of her) even if she won't willingly speak to or interact with the other kids. If directed to she will interact a bit with the other children although she tends to prefer the quietest and most low-key kids in the group. That's fine with me. A relationship is a relationship and we all have types of people who we tend to gravitate towards anyway.

Last weekend Hannah was the flower girl in my friend's wedding. It was a rough trip and we witnessed some pretty bad behavior (of the disobedience/brattiness type) as well as some sensory and social overload with the accompanying meltdowns, but there were also some brilliant moments in which we were able to see just how far Hannah has progressed since we moved and she started her therapies here in Rhode Island. The first was that she was totally ok with the little boy who was supposed to be the ring bearer at the wedding and they even walked down the aisle together. They didn't hold hands (Hannah would have none of that), but they walked down near each other and even played with each other during the rehearsal and reception which is a huge deal since Hannah had never met him before the rehearsal. Hannah even initiated physical contact and expressed an interest in continuing to interact (even if it was in a somewhat inappropriate manner!) with him during the reception by chasing after him when he grew tired of dancing with her and grabbing him around the waist to prevent him from leaving! The second half of our trip we spent at our friend's house and Hannah got to see her good friend Evelyn. We watched in amazement as Hannah and Evelyn played and interacted appropriately and independently for up to a half hour at a time. Hannah was even tolerant of some physical affection and over exuberance on the part of Evelyn. This was usually never allowed before we left, but Hannah was quite tolerant for her and I was impressed. Now, it wasn't all roses and butterflies between the two of them. Hannah had some of her most spectacular meltdowns there and was on a hair trigger for the better part of the second day we spent with them, but it used to always be like that before we left if we tried to coax Hannah to interact with Evelyn or if Evelyn was insistent on hugging or touching Hannah. Poor Evelyn was in a constant state of bewilderment about why Hannah didn't appreciate her affections. This visit was a definite step forward. We also got to visit with Hannah's birthmother and siblings while we were in Indiana. Hannah played with Kayla and Chase and even let them both pick her up and rough house with her a little bit which was surprising although they are both near the age that Hannah normally likes to hang out with since they just turned 6. Hannah, in a bizarre twist, was shy with Tiffany instead of the twins this visit and we really had to coax her into letting Tiffany hold her for a picture. She was pretty chatty with her on the phone a few days before the visit though which was pretty fun to hear.

This weekend we began the messy task of attempting to night potty train Hannah. She's been completely day trained for about a year, but night dryness is not something we have experienced often. I decided to just take the leap of faith and give it a try anyway. We talked it up for about a week before hand and then we double made the bed (two complete sets of sheets and waterproof mattress pads layered on top of each other), put her in big girl undies instead of just in case underwear AKA pull ups, and prepared ourselves for the onslaught of extra laundry. The first night she made it a few hours and then had an accident that woke her up. She was extremely upset by it and it took quite awhile to talk her down and get her back to sleep. About 5 minutes or less from Kyle leaving her room she had another small accident! I wasn't ready to give up and put her back in a pull up already on our first night because I was out of waterproof mattress pads so I just changed her clothes and then put a folded up towel over the wet spot since the bed wasn't that wet. This time she made it until 4am until she had her next accident. At that point I had washed the first set of sheets and pad so I was able to remake the bed and try to send her back to sleep, but she was pretty much up for the day. Last night she did much better. She made it through the whole night and didn't have an accident until 6am, but then it was a BIG one. There was TONS of pee. She did have a dry nap yesterday which was encouraging. Overall I don't think she's done too badly for her first few days. We'll see how things continue.

Today Hannah got her first major haircut. She's had her hair trimmed to remove split ends and cut to even it out several times since she was a baby, but this was the first time she really had it cut to alter the length. We took her to a place that only does kids cuts. They had toys in the waiting area and the chairs all had their own TVs to watch DVDs on and everything was sized for kids. She had a great experience and even let them wash her hair in the lay back sink. We didn't attempt the blow dry and it was probably a good idea since she's been growing more and more sensitive to sounds lately (more on that later). They took 6 inches off her hair! It looks really cute, but it was hard to see it go. Her hair was so beautiful, but she has been increasingly resistant to having it brushed and placed into ponytails and if you leave it down it gets even more ratty and is constantly in her mouth so it was something that needed to be done. Still it pained me to do it. She was quite excited about getting it done though and I think she mostly enjoyed the experience. The stylist even put glitter gel in her hair and she got to pick out a prize for being good just like at the dentist.

Now, back to her sound issues. Before moving to our new house Hannah was really only bothered by extremely loud noises such as hand dryers, garbage disposals, and the flushing of public toilets. However, since we've moved she is constantly putting her fingers in her ears and shouting too loud about all sorts of things, some of which I don't think are all that loud. Included on her hit list now are the vacuum, dishwasher, loud mufflered cars, motorcycles, lawn mowers, babies crying, people laughing loudly, radios playing in vehicles passing by, dogs barking, the sound of the wind when the van windows are down, and many, many other things.

One change that's been happening that I am very disappointed about is that Hannah has pretty much given up her nap. Occasionally if she is really tired she might fall asleep in her car seat if it happens to be early afternoon, but basically she's done. The frustrating part is that her body really still NEEDS that nap. By about 4pm she is seriously cranky and behaving poorly if she hasn't slept and this cutting out of nap hasn't corresponded with an increase in hours slept at nighttime. She still goes to bed and wakes up at the same time. UGH! On a positive note, there are many nights when she is so exhausted by bedtime that she falls asleep before we are done singing her her song so there isn't a bedtime battle that night which is nice.

A few weeks ago Hannah had a nasty rash over a good chunk of her body along with a fever so I ended up taking her to the doctor. We didn't get to see the doctor who I hope will be her new pediatrician, but we saw another doctor in that practice. Since her medical records still had not arrived from Indiana for some reason, I had to fill the doctor in on Hannah's medical history. He, like the urgent care doctor in April, was concerned about Hannah's frequent bouts of pneumonia and spoke with me about some possible causes for the chronic problem. He said the most likely culprit is asthma, but that Hannah is too young to be adequately tested for it. I agree with him that that is most likely culprit given her health history on Tiffany's side (her birthmother). The other too common causes of recurrent pneumonia he mentioned were lung abnormalities and cystic fibrosis. He thinks her lungs are probably structurally ok since someone would have surely noticed a problem on one of her many chest x-rays if there was something visibly wrong. So, he's sending her for a test to rule out cystic fibrosis. The test is called a sweat test and we are going to take care of it next week. Apparently it's fairly simple although it does take close to 2 hours to perform and only select hospitals can do it, but it still freaks me out that we even have to test for the possibility of cystic fibrosis. For Pete's sake, cystic fibrosis is fatal! Talk about a sure fire way to scare a mother to death even suggesting that the disease is a possibility in her child! As far as the rash and the fever was concerned, she ended up having some sort of allergic reaction, but we couldn't figure out what she was reacting to. Eventually the rash went away, first with the help of Benedryl which I quickly discontinued the use of after it turned Hannah into a raving lunatic instead of a drowsy child like the pharmacist warned, and then on it's own after several days of nagging Hannah not to scratch. So far it hasn't returned and I am grateful for that because trying to keep an almost 3 year old from scratching is like trying to convince a fish not to swim! It's definitely not an easy task, dare I say an impossible one.