Wednesday, October 31, 2007

Happy Halloween!

At the Friendly frights forest - complete with glow stick barettes!

Soccer playing princess.....

She scores!

Pool playing princesses!

G was bound and determined to get the donut on the string!

A decorates pumpkins at a gathering for 3 and 4 year olds.

Monday, October 29, 2007

Car seats

We need a new car seat for one of our cars because it is just about outgrown. Both girls are currently in 5 pt harnessed car seats. Three of our seats go to 49" and 65 pounds. But to avoid having to transfer car seats on a daily basis, we have a total of 4 seats (2 per car). We are on the road on long trips a lot, and safety is very important to me. When I started using our older son's Subaru Forester after he left for college, it didn't have a tether anchor in it. The dealership up here had never ordered one, and was clueless. I persisted, and they eventually found the tether bolt and ordered it for us. When Wood took the car in to have it installed, the tech goes "wife a car seat fanatic, huh?".

I'm the only parent in G's kindergarten class that has an issue with them transporting the kids on field trips in parents cars using only seat belts. These are small kindergarten kids - nowhere near the 4'9" tall that kids need to be to use a regular lap/shoulder belt without a booster seat. And they are using the middle, lap only belts on some parents cars, which are totally insufficient in the case of even a low speed accident for small children. I told them at the beginning of the school year that I would have to go on all field trips because G needs to be in a car seat due to her size and weight. Their suggestion was that on field trips, we leave the car seat to be installed in the driving parents car. Over 80% of all car seats are installed incorrectly. The parent would need to be familiar with their owner's manual's instructions for installing a car seat, and my particular seat's installation instructions. It take a good 15 minutes to correctly install one of the kids' seats. All car seats don't fit all cars. Do they really think it's likely that the seat would be properly installed in this scenario?

G is 5 and a half. I started looking at boosters, because I'm not sure how much longer we'll get out of another carseat, even though I prefer the 5 pt harnessed car seats for her. But maybe for the less frequently used seat it would be ok. During my research, I came across a LOT of data indicating that 5 pt seats are the only way to go until they completely outgrow them. Then I saw this:

We'll be getting a new car seat that can be used harnessed up to 80 pounds and 53".

Sunday, October 28, 2007


"From the fullness of His grace we have all received one blessing after another." John 1:16

G is definitely getting better! She has more energy, slept VERY well last night (no horrid coughing to wake her multiple times) and hasn't used her rescue inhaler at all today! We have been using her rescue meds, in addition to our "normal" arsenal of medications, around the clock for 27 days now. She was able to run across the room today without experiencing a prolonged coughing jag. She has good oxygen saturation levels. This is, indeed, major progress. There is no sweeter sound that the blessed SILENCE from her relentless coughing. No matter how many times a day I hear it, for how many months in a row, it literally makes me wince every single time she coughs.

Since she doing so well, we promised her we would all go tonight to the Moosewood nature center's Friendly frights forest, followed by hot cocoa and donuts. Hopefully, the return to normalcy. I will attempt with every bone in my body to resist the compulsion to 1)completely overbundle her 2)let her run ahead if she feels like it 3)not ask her every 30 seconds "are you breathing ok?" 4)put a wall of Purell between her and any conceivable germ.

Saturday, October 27, 2007

Home again...

We got home from Detroit this week. Thanks to everyone for your thoughts and good wishes. G appears to be slowly recovering. Nothing any of the dr's gave her really seemed to have any sort of immediate effect. Nothing to make us (or the dr's) say "XXX is the best treatment for her". It appears to us that despite all the medications and treatments, that we were supporting her at best and giving her body a chance to recover on it's own. Which can be difficult when your immune system has been wiped out by powerful steriods.

Don't get me wrong, steriods have their place for serious illness. She was first given steriods in Arizona last Feb when she had a very scary allergic reaction to Amoxicillin that she was on to treat a sinus infection. At the ER, they gave her vast amounts of benedryl and steriods. She was on steriods for a week after the ER visit. And guess what? Her coughing vanished. She could breathe. To Wood and I, it appeared to be a miracle. She had been coughing nonstop at that point for about 3 months. It was getting worse and we were at our wits end. It made us realize that she was being undertreated for her asthma and other pulminary issues.

Seeing the remarkable effect they once had on her, I know why the drs want to turn to them again. But they don't have the same effect on her. They have serious and significant side effects, including wiping out her immune system - right at the beginning of cold and flu season. They give her wild mood swings. They make her crazy. And they aren't working.

I really need a diagnosis. She apparently has features and characteristics of several different issues. Because she has seen multiple drs, we get the impression that each (except for the specialist in Milwaukee) wants to let the others do the diagnosis - they just want to treat the symptoms and leave the long term issues to others. The Children's specialist wants to see how her symptoms progress, what's next, how she does over the next few months. It has been almost 2 years now since she got her first pneumonia. Until then, she was a perfectly healthy child. She had almost never been sick. She had never even had an ear infection. My hope is that we can get her back to that point, but deep down I fear that those days are gone.

A used to be insanely jealous of when her sister got ill. She wanted the attention, medications, even the dr's visits. She has now seen firsthand of all her sister has to go through, and wants no part of it.

Friday, October 19, 2007

ER visit

We took G to the ER this evening. Her cough is just horrendous. They are adding Zithromax to our slew of drugs. They didn't seem to have a lot of confidence that it would help us reverse this latest downward spiral. They said she may require IV steriods. Heaven help us. Our experience with IV steriods last December when she was hospitalized was horrible. G stopped talking to us entirely. She cried almost non-stop. She was incoherant and confused. Her reaction was so extreme that they stopped administering them. They weren't helping her anyway. I'm starting to think about what I need to pack to head back to Milwaukee.

Thursday, October 18, 2007

It's just a roller coaster, isn't it?

She was almost better. I swear. There was definite improvement a few days ago. It was not just wishful thinking by her delusional mom. G is coughing with a vengance since last night. She's now been taking rescue drugs and higher dosages for almost 3 weeks straight. We spent a good part of this evening watching Funniest Home Vidoes together on the sofa, with my hand on her chest counting her respirations and checking her oxygen level. As her mother, I'm thinking I shouldn't have to KNOW her oxygen level. It should be a given that my daughter would be getting sufficient oxygen. I feel like kicking and screaming "it's not fair!".

Tuesday, October 16, 2007

Early October in the UP

Looks like this! It's getting pretty cold. We should get our first snow pretty soon. Kids wore hats, scarves and mittens to school this week.

Sunday, October 14, 2007

My two princesses....

We have two princesses for halloween this year. We recently watched Cinderella, the version with Brandi playing Cinderella, and that's what A decided to be for Halloween. G, with her pale complexion, makes a wonderful Snow White. Here are some pictures from a Costume party at our local Children's museum.

True royalty.....

A beaming princess

The fairest of them all

No need for a prince to rescue this princess!!

G & A

G's Dr wants her swimming every day.

Can you tell how much A loves the water??

Friday, October 12, 2007

The road to recovery...

G has started to improve. Her breathing is coming much easier for her and the tightness in her chest is improving. Maybe we have turned the corner on this one....

Wednesday, October 10, 2007

Isn't that for sick kids??

We are home from Children's in Milwaukee. The hospital staff was wonderful (as usual). The staff brought to our attention that we now qualify to stay at the Ronald McDonald House across the street from the hospital and tried to encourage us to do so. For those who aren't familiar with these, a Ronald McDonald House (named after Ronald McDonald) is a place where the parents of children that are in a nearby hospital can stay at night for reduced or no cost. These wonderful facilities have provided more than 10 million families with temporary residences near medical facilities where their children are being treated for serious illnesses.

Serious illnesses. This is what gave us pause - uh, aren't these for families who have children with serious or chronic illnesses? Yes, these trips are financially hard. Yes, it would be incredibly convenient. But those are for sick kids and their families. It is hard for us to view G in this light - she is just G, our silly, adorable, incredibly smart daughter.... who has significant and ongoing respiratory issues for the past two years. I'm very comfortable with the chasm in my mind that seperates THEM (families with sick children) from US (family with a temporarily sick child). Stress on the word temporary. Meaning will recover fully and go on to live a full and unrestricted life.

Is is denial that made the suggestion that we stay at the Ronald McDonald house felt like a shock to my system?? Didn't the fact the we are traveling hundreds of miles on a routine basis to seek specialized medical care for our daughter give us any sort of a clue? As parents, it seems intuitive that we always look for the positive, believe in the bottom of our hearts that we can protect our children from anything, fix anything.

Last winter when she was so so sick, and hospitalized for a week with no improvements despite oxygen, IV's, steriods, antibiotics, etc, it took me 4 days before I called our priest and had him come to the hospital. G received the sacrament of Annointing of the Sick at that time. Why did we wait 4 days? What was so scary for us about these comforting words "Through this holy anointing, may the Lord in his love and mercy help you with the grace of the Holy Spirit. May the Lord who frees you from sin save you and raise you up." James 5:14-15: "Is any among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man, and the Lord will raise him up..." Was it because I had to admit that I wasn't in charge, that I couldn't fix my beloved daughter by my sheer willpower and desire to do so?

Saturday, October 6, 2007

Children's Hospital

G's doctor in Milwaukee somehow found room in his completely booked schedule for G. We leave today for Milwaukee. This will be our 4th trip to Milwaukee for G, and we were there for the IAC for A shortly after she came home. We are completely impressed with Children's Hospital of Milwaukee. Rarely have I ever seen such a high level of customer service that completely permeates the entire organization. We've had physicians stop and ask if we needed help as we walked the halls confused, looking for the lab or testing location. Not only did they ask us if we needed help, they walked us to the location, even if it was completely out of their way.

G's dr is just fantastic. He patiently answers all our questions and acts like he has all the time in the world for us. The care we receive there is top notch, and well worth the 7 hour drive each way. We always come home with answers and a plan of action.

Keep us in your thoughts that we can stay out of the hospital until we get there. G is now on her max doses of all her meds, so continued low oxygen levels will land her in the hospital.

Thursday, October 4, 2007

Milwaukee bound....

The clinic in Milwaukee is trying to set us up to see G's dr on Monday. He's also the department head and a professor at the University/Medical school, so it's a bit difficult. Her cough is getting very tight and her breathing is wheezy, even pulling out all her heavy duty medication and keeping her on her rescue meds every 4 hrs around the clock. Praying that we can stay out of the ER until then.

Tuesday, October 2, 2007

The dreaded cough...

is back. Words cannot express how wonderful it has been for the past few months. The dreaded cough was gone. Nights were peaceful for G. She had more energy and actually ate more than a few bites at each meal. She had color back in her face.

Last night she ran a slight temp. This morning, as we were getting the girls ready for school, there it was. My head spun around so fast when I heard it - the tight, barking cough. We gave her her regular morning breathing treatment and added her other meds. She did seem better. All morning long at work, I waited for the phone to ring from the school. They know how to give her breathing treatments at school, but since she'd already had one prior to school, if they needed to give her one, she'd have to have an ER visit. We have also told them to call 911 if she is having difficulties breathing, and to call us second.

The phone in my office ran while I was on a district wide conference call. I grabbed my cell phone, went into the hallway and called Wood, to see if it was him. While doing so, it must have come time on the conference for me to present the divisions I'm responsible for. I was called on to present, and there was dead silence from my office. Oh, well. Wood ended up picking up G and taking her home for the rest of the day. She is doing better, but the cough is still with us.

If it is worse tomorrow, we'll take her back to Milwaukee. The dr there wants to run some tests the next time she is coughing and having breathing difficulties. She's having her breathing treatment now, and hopefully will have a good night.