Whirlwind month

I should have written something up at least a month ago but it has definitely been a whirlwind and trying month that has gone by.

On November 28th, the Wednesday after Thanksgiving we took Olivia to her clinic appointment. It had been 2 months since her last appointment. She had lost a bit of weight during that time. The doctors wanted to admitted her right then, but we decided to wait and make sure it wasn't just because she had been teething 5 teeth and had learned to walk during that time. We decided on making appointments weekly for a while to see where she was headed weight-wise.

The next visit (Dec. 5th) she gained wonderfully. The one after that (Dec. 12th) she had barely gained any. So we were back to the discussion of admitting. We held off until that Monday Dec 17th so we could get business paperwork arranged and take care of the older girls activities.

So off we went for a 5 day hospital stay. Everything from this point is pretty much a blur for me, but I will try to tell what I remember. We checked in after lunch on Monday. Got in a room, had vitals taken, and waited. Finally talked to the doctors (residents), made a game plan which originally was to observe for the rest of Monday. The game plan changed and they went ahead a put the NG tube (small, soft, plastic tube placed through the nose for feeding) in late Monday afternoon. They started slow feeds which they increased over the next few days until she was tolerating the rate that they wanted.

Since she was tolerating the feeds (not gagging, throwing up, fussy, etc) and she was gaining weight from the feeds we were allowed to go home that Friday afternoon (Dec 21st). Along with NG tube attached, a feeding pump, and a crazy! feeding schedule. She is barely eating anything by mouth because she is getting so much by tube feeding. If she gains well enough by her Jan. 2 appointment we can start dropping some feeds.

She was gaining well the first few days home, but the last few times I checked she hadn't gained much at all. I don't know if it is because she has more room to run around here so she is running it all off or what. This is soooo frustrating. Ugh!

And during all this going on the older girls had the following girl scout events - Christmas parade, 2 Christmas caroling events, and troop Christmas party. Alexis also had early ACT testing and band Christmas concert.

"Boy or Girl? It doesn't matter as long as it is healthy"

Have you ever really thought about this phrase? I probably said it a few hundred times before my girls where born. So…..what if it’s not? And what if you are saying this in front of the mother of a baby who is not healthy?

I never really thought about it until we had Olivia. Now when I hear people say it or post it I really have to hold my tongue. You will love the child no matter whether or not something goes wrong. I know it's an innocent comment but it makes me think about Olivia and how we wished that for her too.

Of course we all want our babies to be healthy, but sometimes they’re not. But we love them anyway. Right? That’s what mothers do, love their children no matter what.

CF Clinic, Pediatrician, immunizations, and more

Well, her weight was up some when we did our clinic visit for September 26. She was up to 16 lbs. Still close to 27 inches tall. They gave us the ok to move to whole milk but it has to mixed with heavy cream in a 1:1 ratio! We were able to get our next appointment in two months instead of one month. Her chest still sounds good and so far nothing is culturing from her throat swabs.

Insurance-wise TennCare has dropped her so we are down to our primary insurance and children's special services. We need to see if we can get her on SSI which would automatically qualify her for TennCare but I dread even starting on the process. It will be complicated and she will probably be denied and we will have to appeal. Plus I don't want to end up paying back an arm and a leg if bookkeeping-wise we show a "good" year at the shop.

We did her pediatrician (family doctor) visit the next Wednesday after the clinic visit. She's meeting her milestones. Afterwards we went to the health department to get her shots. Wow! the number of shots for 12 months has increased since the older two were little. 2 shots in each leg and one in each arm. I'm glad she got her flu shot at the CF Clinic the previous week!

Walking

Olivia has been taking a few steps here and there but when she fell down she would just crawl. This past week, however, she has been getting back up and walking instead of crawling. She is still unsteady, but it won't be long before she is running.

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Words

Olivia has a few words. About half can be only be understood by family. She says or has said in the past.

Da
Ma
Ba
Bye-bye (in context)
Uh-oh or uh-eh (in context)
Eh-ee (Ellie)
Hi
Hey
Bay-bee (baby)

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First month of school

Older two girls have made it through the first month of school and all their Fall activities so far.

Eliana started fourth grade. She has already made over 12 points taking the accelerated math tests. Her teacher gives them treats for a certain number of 100s on those tests which is right up Ellie's alley. She has to have that extra incentive but once she has an incentive you are in trouble because she will be determined to reach the goal.

She also got chosen to be on the Principal Advisory committee for her class at school. They do different community service projects throughout the year.

Outside of school, she is playing Fall soccer. Her team has had two games and totally ran over both teams they played against. (I hate when the teams ended up being unevenly matched. They try so hard to get a good mix of players on each team - previous players with new players, previous level with those who have played this level - but sometimes one team just ends up with all the natural talent.) She scored a goal in one game and stopped a goal in the other game. They have one more team they haven't played yet. Hopefully that team will have a bit more of the natural talent floating around or the other teams will get into their rhythm. They rotate the teams for a total of 8-10 games per season but don't play outside our county with this league.

She is still doing girl scouts. She moved up to Junior level this year. The troop is still juggling new girls but there are definitely a lot of new girls at her level. So the juniors will be a great group this year.

Alexis is also still doing girl scouts. Enough girls moved up to her level and a few new joined that Cadettes will have a decent group this time too.

She's enjoying middle school. She has picked the French Horn as her instrument in band. We chose to do the school rental because buying and music shop rental is soooo expensive. If she sticks with it, we'll consider other options. They haven't actually started learning to play yet as they have to wait until all or at least most of the students have their instruments. So I'll have to update on how this goes later.

Alexis also has two super tiny parts in the community theater play - Willy Wonka Jr. She is a candy kid and a squirrel. We probably won't be able to let her do this again because of band. =(

Both girls are also doing the church's children's' choir. They always enjoy doing the Christmas play. They usually get speaking parts and sometimes a solo song or part of a song.

Coming up this month, Alexis will be going to a STEM conference at MTSU for having high TCAP scores in math/science. I think she will enjoy that.

I can't think of anything else going on at the moment. So more next time I get "chatty".

CF clinic visit on 8-22

We had Olivia's clinic visit 2 Wednesday's ago. It went fairly well. We met a new-to-us NP. She's been working at the clinic just not with the infants. She had a better bedside manner than the main doc.

Everything looked good except her weight. She had been on a feeding strike for about a month and hadn't lost any weight but hadn't gained any either. The nutritionist gave us Pediasure; like that was going to help when she already wasn't drinking well. The last couple of weeks, she has been drinking her bottles better and seems to have gained a little according to our scale at home. So hopefully we will have a better weight check at her next visit in two weeks.

July CF Clinic visit

Well this visit didn't go so well. At least it was quick. Olivia weighed in at 6.94 kg (15.3 lbs) and they had her at 69 cm (27 in). Going by that it put her BMI at 6% which was down from her previous 12% and they want her at least to 50% BMI. However, I know they have her length/height wrong because we measured her last night and she is closer to 26.5 inches not 27. If you go by that then she is at 10% BMI, which would still be down but not as much as they are saying.

In all but one of the previous clinic visits we had always seen the nurse practitioner, but she is no longer with them. Today's visit was with one of the head doctors. She wanted us back in a month instead of two months. According to her we should have never been on the two month schedule and should have been on the one month schedule. Anything below the 50% BMI is considered "in the red" to them. Once 50% BMI is reached it is considered "in the yellow" and then you can go to every two month visits.

I think the nurse practitioner understood more of the fiscal abilities of parenting and that being away from your business constantly causes loss of income. And loss of income means we might not be able to pay you thus the NP had us at every 2 months as long as Olivia was gaining BMI consistently. Hubby was not pleased with the going back to every month. It doesn't help when he asks question and the explanations tend to amount to "just because" instead of giving him detailed explanations. I think they assume that we are simpletons and it would just be too hard to explain. I can almost bet his IQ is higher than about half the doctors up there. LOL. You add to that the fact that he has a techie/engineer type mind and you best be giving full-detailed logical explanations.

We didn't see the nutritionist. I'm not sure if we were suppose to or not. I think the doc was a little perturbed by the time hubs got through asking questions and making his point. She gave us a discharge paper and left the room without saying if anyone else was coming in or not. We asked on of the nurses or techs in the hall if we were done and she didn't know for sure so we ended up going to the front desk and getting our next appointment and leaving. *shrug*

I also think the doc was a little out of touch with reality. Her suggestion for helping get the second CPT in for the day was for one of us to read to Olivia while the other does the CPT. Um, I don't know many 10 month olds that will sit still for a 15-30 minute book being read to them any more than them sitting still for CPT otherwise. *rolleyes* I already use what distractions I can with her. *duh*

Girl Scout Camp for the older girls

Alexis and Eliana got to go to Girl Scout residential camp for 3 days at the beginning of this week. They seemed to have a really good time. I'm so glad we were able to get a discount this year and they were able to go. It is good for them to get out with their "mommy". Even though they were at the same campgrounds, they were in different age groups so they got so time away from each other too.

Ellie got to do archery which she hasn't done before. Both girls got to do canoeing which we have done once as a family, but it is different when you do it with other girls your age.

We plan on going troop camping in the fall sometime. Hopefully they will get to ride the horses then.

Better Day Today Than Yesterday

Yesterday was one of those weird off days were things don't go just right, but they aren't really horribly wrong either.

So I tried to re-up Olivia's WIC. Since she is on regular formula instead of the specialty formula now, I had to get a "doctor's note"  in order for WIC to approve her getting regular formula. I can understand needing a note for the more expensive specialty formula. But it seems a bit over the top to need one to go from the more expensive to the the cheaper regular formula thus saving money. Gotta love bureaucratic tape. Thank goodness Vanderbilt has this wonderful MyHealth website that I can log into and send a message directly to her doctors without having to call. I was able to leave a message for them to fax the note to the health department and today I got a call from the health department saying the fax was there. Yay! Oh, and btw even though she is on regular formula it is still a high calorie mixture. That means we don't mix it like the instructions on the canister. We mix more powder to water than the 'normal' way.

Then after all that yesterday, I was trying to get the older to two to pack up for girl scout camp next week. At some point they started fighting. Apparently Ellie bit Alexis without drawing blood then Alexis bit back drawing blood. I think they both knew that they would be in trouble if I found out, because I only found out after I asked Ellie what was wrong after I heard her crying in the bathroom. I was soooo mad at both of them for treating each other this way. I felt like I had 2 two year olds instead of a 9 and 12 year old. Ugh!

Plus Mike had a not so good day yesterday so he was grumpy and moody. Not his usual self at all.

Soooo glad today was been fairly drama free. Whew!

May's clinic visit

We did our clinic visit last Wednesday.Olivia weighed 13.8 lbs and was 25.5 in long. Her weight to length ratio was up slightly but they still want it up more. The nutritionist upped her Creon to 3 pills per bottle and said to use 2 pills for solids now that she is eating a larger quantity of solids.

Nothing was out of the ordinary. The baseline X-Ray from March looked good, but the Dr. said those really didn't show anything for a CF patient. She said that if needed they would have to do a CT scan  (I think that was it, it's been a week so hard to remember. LOL) to really see anything on a CF patient. Makes you wonder why they do a baseline X-Ray then. huh?

Rough few weeks

The last few weeks have been rough on all of us.

At the beginning of February, my dad found out he had cirrhosis of the liver. It was an accumulation of health issues over the years. We had assumed it was at the beginning maybe even the mid-stage and would progressively get worse over the next few years. Instead, he was close to the end stage of the cirrhosis. Over the last two and a half months, he had been in and out of the hospital and the last week of his life was spent in a nursing home. Very hard for a man who was constantly on the go and use to doing his own thing, his own way, on his own time. He passed on Monday, April 23, 2012. We will all miss him so much, but at the same time we are glad he is no longer in the pain that he was in for those last few weeks. I love you, Dad.

Olivia was a trooper during all this. All the trips to the hospital (I didn't make as many as I should have) and all the time spent just being with him and mom at the nursing home, really messed her schedule up. Which of course has messed her eating up. She has not been drinking as many ounces as she should be, but hopefully she has been gaining enough that the nutritionist won't have a conniption fit. The last time I weighed her she was only around 13lbs. I think they want her close to 15lbs by next visit which is only a little over 2 weeks away. I'm not sure she will even make 14lbs by then. /sigh

I think she may be teething on top of everything. I don't see any tooth buds yet, but she is gnawing hard on everything. She's also been working on a few new milestones. She can now occasionally put herself in a sitting position and she's trying to get on her knees or toes to crawl. No actually crawling yet just the attempts.

Plus during all this we are weaning her from exclusively pumping with formula fortification to all formula. We started with 1/4 formula to 3/4 pumped breast milk plus the added fortification formula. We are now up to 1/2 and 1/2 once all the frozen bm runs out then she will be totally on formula.

Luckily, she has not 'caught' anything from anybody during all of this. Which is great considering that there is a greater chance of getting sick from things in a hospital or nursing home environment. Not to mention how many more people have been holding her the last few weeks.

The older two girls, Alexis and Eliana, and I had a girl scout event that our troop was planning during all of this. We had the event Saturday, April 28 and it went really well. The event was a Mad Scientist day. We had 2 troops from other counties come plus some from our own county for a total of 24 girls not counting our six girls who were running it. The experiments were dancing raisins, floating oranges, jumping pepper, fingerprinting, balloon blowing without your breath, crazy putty/bouncy ball, lava lamps, volcanoes, tornado in a bottle, and sharpie tie-dye lab coats.

Plus last week was TCAP (state testing) week for the two older ones. They ended up having to do a make-up test on Friday for their Thursday testing.

Eliana's soccer has been going ok. They've won about 1/3 of their games and lost about 2/3, but they've played really well over all.

I think that pretty well sums  up our last few weeks.

Six month immunizations and more

Took Olivia for immunizations Wednesday. They are a walk-in health department so I don't have to make an appointment to do these and they don't weight her when they do them. She did good, only cried for a second or two. I waited until she was showing some irritation before giving her any pain meds for the immunizations. She never got a fever but she started fussing when we touched her legs where the shots were given so I gave her one dose and she was good to go.

I was able to get her to sit last night with no support anywhere near her. Yay! So now we have the major milestones of rolling both ways and sitting unsupported out of the way.

This excess of pollen ( seasonal allergies ) seems to be only bothering her slightly. Occasionally I'll see some clear drainage or hear a small cough which could also be from the reflux.

Eliana has started the spring soccer season. They had their first game last Saturday and won. This Saturday's game will probably be a lot tougher. I've seen this other coach from previous seasons and he always does a good job teaching the kids.

Both Eliana and Alexis wanted to do children's choir at church again. It makes Wednesday's interesting since we have Ellie's soccer practice right before choir practice. They are practicing the VBS songs this go around. In the fall if they decide to do it again, they will start on the Christmas play.

This month's doctor visits

Yesterday was CF clinic day.

Her weight was at 11.6 pounds and her height was at 24in. Since she gained in both, her BMI stayed the same as last visit 14.2 (not sure what that is percentage-wise). They want her BMI at 50% so they were glad that she didn't lose and she gained but the nutritionist wants her to eat more ounces in a day and more calories to get the percentage. Mike has issues with this because he is afraid she will develop bad eating habits/comfort eating. I don't have as much problems with this as I have been reading how hard it is pancreatic insufficient/cf'ers to gain and keep on weight. Since we will be increasing the ounces/calories in her bottle, we are to go up on her Creon6 to 2.5 pills per feeding. (Her bottles are to be 3-4 ounces of breast milk fortified with 2 tsps of Pregistimil plus 1/8 tsp salt spread over all the bottles for the day. This makes for approximately 28 calorie per ounce bottle and most formulas when mixed the normal way are between 20-22 calories.) There were no other significant dietary changes.

Her o2 stats were at 100. We are pretty sure there is no lung involvement at this point in time. However, yesterday we did her baseline chest x-ray so we will find out the results of that at the next appointment. We don't have to go back for two months. Yay!

Today was her pediatrician appointment. She's meeting all her milestones. They had her weight and height different. Vandy has to be much more meticulous with that because of her cf, I think I'll stick with their readings. LOL. Although, they were much more pleased with her weight gain than the Vandy nutritionist. She showed off for them, in a good way - babbling, smiling, trying to stand and roll when she shouldn't, etc. We go back in three months for a milestone checkup.

Last week's CF clinic visit

We did the CF Clinic visit this past Wednesday.

Olivia is up to 10.7 lbs and didn't gain any length, 23 in. This puts her BMI up to 14.2 (originally 10.4, I think). We didn't change any of her meds this time. We did ask the nutritionist to send in a prescription for vitamins since the Creon ppl won't send her vitamins now that she is on TennCare. So far we haven't seen a script come in to the pharmacy for the vitamins so I guess we are going to have to send a message to remind her. The nutritionist gave the ok to start other solids besides the cereals.

We got the results of the genetics test. She has two different mutations:
1) deltaF508 - the most common marker
2) 394delTT - from what little I have been able to find, this one is considered a Nordic mutation (common in Denmark, Finland, etc.), eh, I guess she has a little Viking in her.

I need to find the time to sit down and do more research on both mutations. However, from everything I've read and been told, people with the same exact mutations can have totally different outcomes.

Kalydeco is NOT a miracle cure for ALL cystic fibrosis

I love that so many people love my little Olivia and want to let me know about this new "miracle" drug. However,

• It only works for ONE genetic mutation of cystic fibrosis. There are over 1400 mutations. Yes you read that right OVER 1400 mutations of cystic fibrosis and you have to have two mutations to get the full blown disease and not be a just a carrier. One from mom and one from dad. They can both be the same mutation.
• The chances of either of Olivia's mutations being this one is slim. It is from what I have read a rarer mutation. The lab work has been sent off to find out which mutations she has. I'm not sure how long it will take to get the results back.
• It not approved for anyone under the age of 6.
• Have you seen the price of this stuff ---- $294,000 for one year's worth !!!! http://www.nytimes.com/2012/02/01/business/fda-approves-cystic-fibrosis-drug.html?_r=1 You better hope your insurance covers this. btw Did you know that insurance has a lifetime maximum they will pay. Usually around a million, but this would max it out in 4-5 years!!

The good news for us is

• This gives researchers a jumping point for creating medicines for the other mutations.
• If she does have this mutation, in six years we can look into using it. Wonder how long it will take to get a generic cheaper version?!?

I'm glad this is available for other families. I'm glad people want to help us. I just wish people would quit pointing out this "wonder" drug once a month or every so many weeks, especially since I then have to explain that it probably won't help us. We are keeping up with the new breakthroughs in cf. In fact if you want to keep up try joining the CF Foundations Facebook page http://www.facebook.com/cysticfibrosisfoundation .

I know people are trying to be helpful. It's just frustrating to have to explain it over and over again.

January 2012 CF clinic visit

Well the CF clinic has moved from the 5th floor to the 10th floor. They are now doing this thing to try and not spread 'contact' germs between CF patients. So they put on the disposable gloves and gowns between visiting each room. Makes it a bit more interesting watching them pull on and off gloves, etc. lol

They took a few more stats this time too. Olivia weighed 4.44 kg (9.76 lbs) and was 58.5cm (23in). Her O2 was at 100. Underarm temp 97.4*. BP, which they hadn't taken before, was 89/43.  All this before we even got to the room.

Get to the room and do the normal "Is all this information still the same" routine with the nurses. Then wait what feels like a really long time to see the nurse practitioner, who is the person we usually see. She likes her weight/growth, listens to her breathing, decides to add Prevacid for the acid reflux (they may remove the Zantac later), and checks to see if we have any questions.

Next up is the nutritionist. She checks to see how much Olivia is eating at one time, ups the Creon 6 to 2 pills per feeding, gets us another can of Pregestimil, fills out the paperwork for WIC to get more cans of Pregestimil, and gives the OK to do small amounts of rice cereal mixed with breast milk or formula.

Then lastly comes the bad part, annual lab work. Back in come the nurses. They draw 14-16cc of blood from her scalp (actually easier than doing her leg or heel), but still horrible =( They had to prick her twice to get enough. She screamed bloody murder. =( At least it is only once a year and next time they should need as much, since with this batch they are also doing the genetic testing. The things I remember that they are testing for platelet count, C-diff, and vitamin levels. I know there is more but that is what I remember at the moment.

4 month well baby checkup

I took Olivia to her 4 month well baby appointment yesterday. Her length is still the same as at Vandy last month, 21.5 in. Her weight is up to 9 lbs 8 oz which is almost a 1.5 lb gain since last month! She is still on track milestone wise. Pediatrician is fine with her starting solids but we probably won't do anything except for the tiniest bit of cereal until the CF nutritionist gives the OK and explains more on how to give the Creon with solids.

Musings of the Day

So far little girl has not gotten any respiratory problems this cold and flu season. *knock on wood* Hopefully it will stay that way and keep her lungs nice and clear. I keep hearing about so many *healthy* babies that are having to go to the hospital for bronchitis, pneumonia, etc. and having to do breathing treatments (I'm assuming nebulizer) that it's making me a bit nervous.

Yesterday, we had our home visit from Children's Special Services. So now, just for Olivia, besides our private primary insurance, we have TennCare as secondary and CSS as tertiary. Hopefully, this will help keep us from having to pay too much out of pocket for her care. The next step is to see if we can get her on SSI.

Next Thursday we have her regular pediatrician visit and I will take her to the Health Department to do her vaccinations. As far as I can tell she is hitting all of her milestones. In her favorite bouncy chair she will bat and grab at the toy bar. She is finally attempting to roll over but usually doesn't succeed. She hold her head up well and she is smiling.


The week after that we go back to Vandy and will be doing the genetic testing that week. I dread that one. Trying to measure her at home, we still have her at 21.5" so she hasn't gained in length since last month's Vandy visit. I think she just had a really big length growth spurt last time so now she has to catch her weight back up to even out her BMI which they want as close to 50% H vs W as possible. We have a set of postal scales that almost exactly match the Vandy scale and she came to 9lbs the last time we weighed her on it which is a gain of a pound. We have a week and a half to get another half pound or so on her.

The newness of having a baby sister is starting to rub off of the older girls. They still love on her and help with her, but not as much as before and rarely do they fight to be the one helping anymore. LOL.

Tonight, we have a girl scout meeting. Baby girl may as well be part of the troop. If Mike is under pressure to finish a project, she hangs out with him; otherwise, she is in the stroller or sling and hanging out with the troop. Tomorrow, she gets to hang out with Memaw for a little bit. The local scouts are having a cookie rally/pool party with no tagalong baby girls. I think it will be good for the other two. They will get some time with mommy without Olivia even though they will be together.