Clinic visit and more

So today, early in the morning, we had Olivia's follow-up appointment for the docs to see how she is doing without the NG tube in. We knew she would lose some without it, but wasn't sure if it would be so much that they would want to put the tube back in or not. Last Month's weigh in was 26 lbs 13 oz and today's was 26 lbs 9 oz. Height last time 83cm vs 83.7 cm this time. 

Even though she lost weight and gained height, her weight vs height was still around 82% (prev 88%). Since she still has a good "cushion", they decided to keep the tube out. However, since she lost weight, we still have to go back next month instead of two months. They also want to try an appetite stimulant to increase that hunger feeling that she is finally really starting to feel and understand.

Overall a " Merry Christmas" appointment, especially considering that last year at this time she was in the hospital getting her first NG tube placed.

After the appointment, Memaw helped me finish a little Christmas shopping. I think I'm done with the girls except for stocking stuffers. 

Later, this evening the whole family plus Memaw went to see the "Dancing Lights" at Jellystone Park. So worth the $25 per carload! Especially, hearing your 2 yo "ooh" and "aah" over the lights and the older sissies pointing everything out to her.

Clinic visit for November

Olivia, Memaw, and I went to her normal clinic visit yesterday.

She was up to 26 lbs 13 oz. and 32.3 inches (88 % weight for length, I think). I have had her down to 120-180 ml at night only for overnight tube feedings. The docs were impressed that I had her down to that little. So the decision was made to trial her without the tube. YAY!!!!!! Now I hope it doesn't backfire and she goes on a feeding strike.

The bad news is that I have to take her back in a month to make sure she holding her ground. I could really use that 2 months that I'm use to in order to get her on track with eating like normal folks. I know she is going to lose some (possibly a lot) of weight now that we have pulled the tube at least until we get her adjusted. I don't think a month is a long enough time frame to make a judgement call on this. =/ But they weren't going to let us pull it unless we agreed to come back in a month. /sigh

I tried to get the nutritionist to tell me how much would be an acceptable loss if a loss did happen and she wouldn't give me any sort of figure. I asked her twice. =/ The only thing any of them really said was "don't stress about it". Yeah, right! *rolleyes*

Soccer Playoffs

Alexis and Eliana participated in AYSO U15 soccer playoffs today. Olivia spent the night with her Memaw last night and came back to her daddy before the older 2 and I made it back home.

We left at 6am and had a 2.5 hour drive to the playoff area. The girls and their team played a total of 4 games. Including their team, there were 5 teams in their age level; two of those teams were from our town. The girls' team had the following record:

1st game loss 3-1
2nd game win 3-0
3rd game win 3-1
4th game win 2-1 (this was against our other hometown team)

There was a scoring system based on whether the team won/loss/tied, how many goals over the other team, and whether or not it was a shut-out game. After all the scoring was done, the girls's team placed 2nd and the other hometown team placed 3rd.

The day itself was a bit chilly and misty/rainy, but the girls had a blast. They really enjoyed themselves. In fact, Alexis enjoyed herself enough that she is considering doing soccer again in the spring and she's not a sports person. LOL.

Our hometown also had 2 U11 teams play. Their age level had a total of 6 teams. Our teams took 1st and 3rd places. =)

We got back home around 8pm and were totally exhausted!

Flu shot and more

Olivia and I went to the health department yesterday. I was thinking she need 2 year old shots but the only thing we really needed was her flu shot. It is recommended for all CF patients and their family/caregivers. I'm assuming because the flu can easily turn into pneumonia. So she and I got our flu shot yesterday. I don't know about her arm but mine still hurts. LOL.

We also re-upped her WIC. Sometimes I feel weird getting the WIC. It feels so much like asking for a handout but it helps soooooo much with her Pediasure. Hopefully soon we can get her completely off the tube feeds then we can work more on getting her to eat real food with high calories. We've had the tube out for a few days letting her cheeks clear up from where the tape has breaking her out. Even with using the Duaderm (sp?). We'll have to put it back in soon. I'm sooo dreading that. She understands what is going on now and really fights it.

The last thing we did at the health department was pick up her CSS card (Children's Special Services). It's like a secondary insurance card. It helps quite a bit on her insurance deductible.

The ladies at the health department were amazed at how much she had grown. They were also surprised at how much she was talking. She can easily hold a small conversation with you. Her vocabulary is amazing, but her pronunciation is still very lacking. LOL. You have to listen very carefully to understand what she is saying.

Next thing to schedule is her 2 year "well-baby" visit with the pediatrician.

Another good clinic visit

Olivia had a good clinic visit today. She did both her weight and her height standing up again. She measured at 80.3 cm for height (2ft. 8in). She weighed 11.65 kg (25 lbs 11 oz). Both were up.

She was not happy with doing the throat culture today and clamped down and refused. We were finally able to get her to open up long enough to hopefully get a decent culture. No blood work needed. We decided to wait and do the flu shot at the health department with her vaccines in a few weeks.

The nutritionist gave the ok to lower the overnight feeds further. So hopefully soon she will be completely off those. The tape is tearing up her poor little face. =/

On a side note, you have to be very careful what you say around her now. She has definitely hit the "parroting" stage of childhood. Mom and I stopped at Cracker Barrel on the way back to eat and she said "cracker barrel" so clearly we both commented on it. LOL.

Clinic Visit of July 2013

Olivia had a good clinic visit today. She did both her weight and her height standing up for the first time today. She measured at 79.6 cm for height versus 79.7 cm (31.4 inches) last time when she was laying down. (Note: measurements laying down are almost always longer than standing). She weighed 11.35 kg (25 lbs even) standing up versus 10.8 kg (23.8 lbs) sitting/laying down.

She didn't cry for her throat culture. She had to have blood drawn to re-check her vitamin D levels. She didn't cry for it until the very end when she got tired of sitting still.

The nutritionist gave the ok to drop another tube feed. If she's still gaining well, in a month to drop part of the night feed. We've actually already dropped all the day feeds and have started lowering the night feeds on our own. I sure don't plan on telling them that until she is completely off of the feeds. They have been less than helpful with the tube feeding to put it nicely. She has still been gaining really well with following our tube weaning plan. She would still be mostly tube-fed if I followed their plan so I will continue to follow our own wean schedule unless her weight starts declining.

Skill evaluation and more

I decided to have Olivia's eating skills evaluated by Early Intervention. I wanted to get it done before she aged out of the early help programs which are for 0-3 year olds. She doesn't turn 2 until September (21 months right now).

When they put the NG tube in, she completely regressed in her oral skills. After 6 months, she has finally gotten back to where she was before the tube was introduced. She has not gained any new feeding skills. Based on what the older two were doing as far as eating at this age, I wanted to check to see if they considered where skills behind or not. Not being a doctor or therapist, I can only judge based on what the older two were doing at this age or by what I read online. The only way to do this was with a full evaluation. I knew her other skills were on target and not delayed. The only thing I was worried about was the feeding skills.

So the lady came today to do the evaluation. Olivia's feeding skills are at the low 2 year old range except for spoon skills which were a tiny bit lower.  Probably not enough to be considered a delay,. The rest of her skills amazed the lady. She was testing at the 2.5-3 year old range on most of her other skills. I have one smart peanut on my hands. Of course, the lady couldn't officially tell me that Olivia wasn't delayed. The results have to be plugged into the computer to get an official "number". So I have to wait to here back to see if she qualifies for early intervention which I don't expect she will. The only thing that *might* get her in will be if they ever officially diagnosed her with Failure to Thrive (FTT) in her medical records.

On another note, she has been binky-free (pacifier) for  3 weeks now. YAY! She was mostly using it only at night with an occasional use during the day --- if she found it during the day or  if she had something "dramatic" happen; such as, scraped knee. Three weeks ago I stopped using them at night and tucked them away where they couldn't be seen but they were still available if needed. She hasn't asked for one since. Of course, it might be different if she ever sees one. LOL. 

Eating frustration ... Ugh

For two or three days, Olivia has been drinking 3-4 oz of her Pediasure consistently at a time. At those rates, I have a chance of actually getting her all the way off the NG tube. However today, she has decided to drop back down to 1.5-2 oz consistently. Argggghhhh!!! Hopefully the latter is the fluke and not the former. /sigh

Relief times 2

We got the Genotyping back for the older 2 girls. Both are carriers of the CF gene but neither has it. One has the most come gene - the DeltaF508 and the other has the other gene that Olivia has - the 394deltt. One of them is also a carrier for another rare genetic disease (Zellweger Syndrome Spectrum). I haven't really had time to investigate it other than doing a quick general search. But from that search it looks like it may be even rarer than CF. Good thing she's only a carrier.

Pretty good clinic visit and general update

Olivia had her clinic visit this morning (May 15). She was a good weight 23 lbs 12 oz (10.8 kg) and height 31.4 in (79.7 cm) . That was a gain of almost 1.5 lbs and almost 1.5 inches in two months at a time when she should be slowing down on growth some. Yay!! We got the official Okay to drop another day time tube feed and don't have to do another regular visit for another 2 months in July.

On another note, she has taken off in the speech department. Pronunciation is still definitely in the "toddler-only-close-family-can-understand" range, but she is doing 2-3 word sentences and more complex concepts. You just have to listen really hard to understand what she is saying. Plus she uses some words to mean several things. Such as, "off" can mean turn off, turn on, up, down, etc. She will also occasionally parrot words back to you. Have to be careful what we say now. haha

She's also initiating going to the "potty" some on her own. We are not officially working on that yet, but have encouraged her to go when we have time to help her.

Some current phrases (not all):
Sissy - for the sisters with the accent on the last syllable LOL
Fishy - real fish or goldfish crackers
Sittin' - when she wants you to sit beside her, usually with a pat of the hand beside her
There she(he/it) is
Mimi or MawMaw - for Memaw
Donna - for Aunt Donna
wheeee - fun at the moment LOL
swing
boll - BALL
Boh - Hairbow (sometimes confused with Ball the way she pronounces them)
Pillow - pillow or very slightly different pronunciation means color/draw
walk
Shoes - for both shoes and socks
Close - to close the door
WoofWoof - for dog
Whoa - something scary or surprising

Worst blogger ever ... maybe pretty close to it LOL

I rarely get a chance to sit down at the computer and type up a blog post. I find it too hard to do on the iPod which I'm on more. I've thought about making Little Miss Olivia a Facebook page. Then I could put short little blurbs up instead.I'm not sure that would really work either. I'll have to think about it some more. Anyways ....

She had her last CF clinic on March 20th. She had gained almost 2 lbs in a month using mostly her NG tube. Very little oral eating, because the tube keeps her so full.  =/ She was at 30 in tall and 22 lb 6 oz. They were happy enough with the gain they said we could take ONE feed to entirely oral. Like she's actually going to get hungry enough to really eat by just removing one tube feeding. Everything I've read about tube weaning says you have to remove a substantial amount of the feedings so that the person actually feels hunger for the weaning to work. /sigh At least they let us go two months until the next CF visit as long as we take her for a pediatrician weight check visit. Which leads us to .....

The pediatrician visit on April 19th. They had her at 31 in tall (Wow a whole inch height gain, that's gonna throw the weight vs. height ratio off some) and 23 lbs 3 oz (another good weight gain even with dropping a tube feed. YAY). She said her milestones where on track except for of course the eating. Not sure how much help the pedi will be with this later. We'll have to see later as we see how much the CF clinic let's us pull her off the NG tube.

Next visit will be to go back on May 15th to the CF clinic. Hopefully she will still be in a good enough Wt-Ht range that we can eliminate one or more tube feeds.

Olivia milestones

Current words she's saying
Mama
Daddy
Ellie
Sissy
Exis (Alexis - said twice so far)
Ba (ball)
Baby
Cah (car)
Uh-oh
Hi
Hello
Pretty (will sometimes repeat thus after you say it)
Ducky
Kitty
Baa (sheep sound - copying you)
Doll (said a few times)
Bah (bottle - repeated a few times)
Peep-eye
Eye
Ear
No (nose)
Mou (mouth)
Mimi (Memaw - Grandma)
Bye-bye
Beep
Bacpac (backpack - from Dora)
This

There may be a few more words but I can't think of them right now.

She can point to the following body parts when she is in the mood-
Eye, ear, nose, mouth, tongue, hair, head, belly, foot

She's walking very good now. She'll occasionally sit for a story read to her.

She knows how to turn the girls' old Leapster games on and get into the game but hasn't figured out how to play the games yet. She can turn on and off some of her toys.

She can blow kisses and wave bye-bye when she is in the mood.

Mini rant

I'm not sure if I'll be able to write this without sounding rude/crude or offending someone. Probably not, but it is my rant/vent so here goes.

I'm so tired of seeing posts, etc., of disease 'xyz' kills more people than disease 'abc' 'def' 'chi' put together. It doesn't matter how many more or less people a disease kills, it still kills them. Just because your friend, family member, etc. suffered from the 'xyz' doesn't make the other diseases any less important. It doesn't make the heartache of the people who know someone who died from the other diseases any less or the suffering of a person who has one of the other diseases less. Personally I would feel worse, because it makes it seem like people think that the person was less important than the person who has/had the other disease(s) was less important than the one who has/had 'xyz' disease.

This affects me a lot since Olivia has cystic fibrosis. CF is still considered to be a 'rare' disease. So, yes, not as many people die from it because not as many people have it. However, it is considered a terminal disease. She will NOT be 'cured' of it, nor will she ever have a 'remission' from it. It will always be there. And she may not die in 'childhood' but her life expectancy is only about 35 years old. So chances are that I will outlive my child.

HER DISEASE IS JUST IMPORTANT AS ANY OTHER DISEASE AND SHOULD NOT BE LISTED AS AN EXAMPLE OF A DISEASE THAT KILLS LESS PEOPLE THUS MAKING IT LESS IMPORTANT TO TRY AND CURE!! Nor should any other disease be listed in that fashion.

I'm not trying to be insensitive to those who have had to deal with 'xyz' disease. I do sympathize with their passion to find a cure for their disease and what they have had to go through. However, I think it is terribly insensitive of them to post things that make it seem that one disease is more important than another. I don't think they are purposely trying to be insensitive. I think they just aren't thinking about how people who have to deal with the other diseases that they are listing feel.

I hope that makes sense. And I was trying to be sensitive by not listing any specific diseases except for my daughter's.

CF clinic visits for Jan 30 and Feb 20

Since I'm usually in the living room with Olivia, I don't get in the computer very often and it's hard to type on the iPod thus the reason I've gotten behind on updates.

So for the Jan. 30 visit, we met with a doc we've only met once. Before this visit, we were trying the removal of the daytime NG feeds but keeping the overnight feeds. Since she wasn't taking as much as they would like orally, they decided to put the day feeds back. Which to us was a bit confusing. She had gained weight but no height so the percentage between ht/wt would have been higher. Plus the doc gave us a percentage that was ONLY her weight % which was not what we had asked. We, of course, had asked the % ht/wt. The doc wanted us to come back in 2 weeks, hubs wanted 1 month, it was finally settled on 3 weeks.

Last week's visit (2-20) I was worried about because Olivia had a tummy bug the week before the visit. Thanks older sister Ellie for sharing your tummy bug =\. LOL. Olivia lost some weight (about 1 lb) during the tummy bug and I wasn't sure if she had gained it back yet. She had gained it back and weighed a *whopping* .04 kg more than our previous visit. The PA (our normal provider) was ok with her weight but you could tell she wasn't terribly pleased with it. *rolleyes* Olivia had also developed a slight cough from drainage. I'm pretty sure having vomit come out your nasal passages will irritate it enough to cause so drainage. They weren't worried about it since it wasn't in her chest. She also had a little fluid in her ears but no infection. Pretty sure that was caused by the drainage/vomiting.

They said they would consider a slow removal of day feeds at the next clinic visit if she shows good gain. Since the tummy bug she has pretty much completely quit eating orally so I'm not sure how we're going to get her to eat again. /sigh

I think that pretty much covers her clinic visits.

NG Tube and Clinic visits update

 I'm not sure if in the last post whether I explained how  Olivia's NG tube feeds were to be run or not. We were to try and get her to take food (pediasure) orally at breakfast, lunch, dinner, and 2 snacks. If she didn't drink the pediasure by mouth, then we had to feed it through her NG tube plus we had to do a 10 hour overnight feed.

We took her back to the CF Clinic two weeks ago (Jan. 2). She missed her weight goal just slightly so she had to stay on day feeds for at least two more weeks. We were quite disappointed at that appointment since she barely didn't make the goal and they didn't let us drop the day feeds yet.

Weight wise on Dec. 12th when they asked us again to put in her for the NG tube her weight was 16 lbs 5 oz. On Jan. 2nd her weight was 18 lbs 4 oz. A TWO POUND GAIN!! However the goal was 8.5 kilograms, she was only at 8.27 kilograms. /sigh Height wise she gained a few tenths of an inch but it gets rounded to the nearest inch on their online notes for us which was 29 inches. They enter it in cm.

So we went back today (Jan 16). She is now at 20 lbs 2 ounces (9.12 kilograms) and 30 inches (75.5 cm or unrounded inches is 29 and 3/4).  Her weight to height ratio went up to 44%.  They are letting us do normal feedings during the days. YAY!!! Now hopefully she'll start eating again since she hasn't been and we've been having to push them all through the NG tube. They want her to do 17 oz of pediasure during the day. Before all this happened she was only doing about 13 oz. We are still doing night feeds and we are supposed to increase the oz. (ml) of those so I'm thinking that will keep her from being as hungry during the day as she should be. =/ Put hopefully it will go well. We have two weeks to get her in a groove with this.

On another note a good friend of mine's daughter passed away this week. It's been bothering me some because
* nobody should outlive their child
* she died at 35 and that is the around the average life of CFer right now

I think that sums everything up so far.