:(

Addy is really not liking her tender grips. She ripped off the flaps today so we had to take them off :( I didn't put them back on her today to see how she would do at nap. She fell asleep on the floor in the family room so I just hooked her pulse ox up and could see it :) She did just fine! Stayed 92 or better while she slept! So we are going to try no O2 tonight to see how she does :) REALLY hoping she stays above 90 so we can stop the O2, her cheeks already need a break!

Ugh

Last night was just plain awful. Addy had two good nights sleep since coming home but last night was not the case. She fought going to sleep. Once she'd get to sleep and I'd put her in her room, it wasn't 5 minutes later and she would be screaming bloody murder. She has never done this before. We've always been able to read stories, turn on her music and she would go to sleep on her own. I really think having to hook her up to her O2 is messing her up. She cries and cries when I put it on her at night. I really don't think I'd be able to get it on her once she's asleep without waking her up but I'm willing to try at this point. I finally got her to sleep at 3am and she stayed asleep. I am beyond exhausted today. There was no way I couldn't go to work, I've missed too much and I'm so far behind. Can't justify the loss of pay either :( So I trudged along but not very well, my communication skills were less than desirable today. Thank goodness I was only conducting meetings and doing a little testing, not working with a child's communication skills today!

My friend, Deborah, and I are heading to Kansas City at 4am so I'm going to bed once Scott is home. I could seriously fall asleep right now!

Good Day :)

Addy acts like she's feeling better today :) Lots of giggles and smiles :) She is back to walking everywhere again and isn't falling as much. She is just barely coughing today too! I really hope we can kick the O2 out the door sooner than the doctors think. She was not at all happy about it last night :( She cried and cried when I put it on her. She pulled her tender grips off today and told me she was "all done" lol. Fortunately she didn't rip her skin like she did when she was a baby! After her bath I put extra lotion on her though, hoping by the time I put them on tonight they will still stick! We have a substitute nurse tomorrow :( I REALLY hope it's not the one that came and I said I didn't want back! I couldn't remember her name now I'm kicking myself about it! I can't miss work, my Fridays are super busy with test write ups and I have 3 meetings tomorrow.

I wish I was off tomorrow, Jake's honor choir the Junior Jays are performing at the Missouri Music Educators Conference at Tan-Tar-A. They only ask 3 choirs from the entire state to perform! It's a huge honor! Cooper was also in the choir last year so he gets to go to support the choir :) I think he only wanted to go to hang out with his friend, Mason, and eat McDonald's but hopefully he will be supportive :)

I'm heading to Kansas City on Saturday for the Take Flight conference put on by the Down Syndrome Guild of Greater Kansas City. I love going to workshops, they are always so good! I also get to see some of my KC peeps which really does wonders for my soul! I had to miss Rochelle in October for Step Up, Alayna was in the hospital then :(

Post Hospital Visit

I took Addy to her pediatrician after school today for a post-hospital visit. She told Addy that she wasn't supposed to get sick when she was out of town :) She didn't received the discharge summary from the hospital yet and wasn't too happy about it but we managed just fine. She checked Addy out and agreed that she has a ways to go before she is over the RSV and MPV. She didn't add any meds to her since these are viruses and she just needs to let them run their course. She did feel Addy has developed a yeast infection from all of the antibiotics she got last week. We are continuing O2 for at least a couple of more weeks since her lungs have really taken a beating. She is also consulting with Addy's pulmonologist to see if he wants to follow her again and decide when we should start trying to wean the O2. She stayed above 93 today on room air, yesterday she didn't. I'm going to hook her up to her pulse ox overnight in a couple of days. It's pretty doubtful she would need more than a liter at night since she was down to 1/4oth of a liter in the hospital.

Addy is really happy again tonight. She is practicing her signing by finger spelling her name with Rachel Coleman :) She LOVES singing the alphabet and watching her sign it is a stitch. Those little fingers really try to make all of the letters :) I'm so glad she is verbalizing again. She didn't in the hospital but I am so thankful that Addy has such a huge sign vocabulary since that is the only way she communicated with us last week :) I was actually so happy to hear Addy say "Jaaaaaake tooooooop!" (Jake stop!) She slept much better last night too. She is adjusting to a normal schedule again, it will probably take a week before she will go to bed on her own again. She got so used to mommy and daddy holding her all of the time!

Adjusting

I am beyond thrilled that Addy is home but she did not adjust well last night. She screamed bloody murder every time I tried to put her in bed. I ended up dozing on the couch while she watched Sesame Street. Finally at 12:30 she asked to be picked up so we rocked for about the 10 millionth time and she fell asleep and stayed that way until after 9 this morning. I didn't put her pulse ox on I wasn't worried about her since she was on more oxygen here at home than she needed in the hospital and I didn't want to risk waking her up!

I just got her down tonight after the third try. I'm hoping that her days and nights get straightened out, I am exhausted. Scott is now fighting a terrible cold. I'm sure he caught it from Addy, he sounds and feels awful :(

Jarika came home for a little bit today, I missed her birthday so I'm so glad we got to see her! She opened her birthday presents and made Addy laugh like crazy, it was no nice to hear!

I'm off to bed now, hoping I drift off easily, I am sooo sleepy!

HOME

After spending 8 days, 7 nights in the hospital my Addysen is HOME! Naturally I put her in the tub almost immediately once I got home from work :) She looks and smells so much better! Her cultures came back today and Addy did indeed have RSV on top of the MPV!!! No wonder she really wasn't getting any better! She went all day yesterday without oxygen but didn't make it through the night :( We were told that she'd have to be off O2 completely before coming home. Fortunately, her pulmonologist wanted her discharged as much as we did and sent her home! She will have to be on oxygen while she sleeps until she gets over all of this crud! I imagine it's still going to take her a couple of weeks. We will continue doing some CPT with the little thumper thing to help keep breaking up the pneumonia though. I am soo pleased to show you that now that her cannula is gone her mouth is closed! Thank goodness! That was making me crazy! She is going to be none to happy when the cannula goes back on at night but we'll have to make do! I'll put her tender grips (little stickers) on her face before she goes to sleep and Scott and I will tag team to get the cannula on her once she's asleep :) She's so sleep deprived I'll probably just try to put her to bed with it on, she really needs some sleep! She won't know what to do being able to sleep more than 30 minutes to an hour at a time! Hospitals are the worst place to try to sleep! She is sitting in her favorite chair watching all of the Play with Me Sesame she wants until we put her to bed :) She isn't walking anywhere yet but she is talking again :) How I've missed her sweet little voice! Thank you so much for all of the prayers for our little rockstar, we so appreciate it! Not too bad of a war wound! It helped that the IV went in the first time and she was numbed up!

Day 7

Addy is doing so much better! I'm pretty amazed with her turnaround since yesterday. Especially after getting the news that her lungs weren't any better. I think the massager CPT has definitely helped! She got down to 1/40th of a liter of oxygen last night. They did have to turn her up at night when she was sleeping. She has been off of O2 all day today! No problems either! She even napped some and did ok! So... I'm very prayerful that she will make it all night tonight without O2 and we will get our discharge papers tomorrow! Her pulmonologist will check her out before he releases her and he usually makes rounds pretty early :) I went up and stayed a few hours after church today so Scott could have a little break because he is staying tonight and tomorrow. REALLY hoping that doesn't go into Tuesday! I cannot miss any more work, like I said, my paycheck is going to take a big hit and we really can't afford that :( Addy was in really good spirits so I seriously think tomorrow is the day!
Oh this tongue! It's going to be the death of me!

Day 6

Addy and I had a rough night! I had just gotten her to sleep and in her crib and the PCA wanted to weigh her. I said no that I had just gotten her to sleep. So she said to let her know when she woke up. She was good and sound asleep and it was time to hook up her IV antibiotics :( Fortunately the nurse was awesome and was able to hook her up without waking her! However, it was also time for her Zantac and we managed to make her stir a bit :( Well, Ms. PCA heard she was "awake" and came in to weigh her. She barely stirred! Well, that was enough to have me undress her and wake her all the way up to get her weighed! I feel bad that I really wasn't very nice about it but that drives me crazy! Let a little one sleep so they can get better! It took a couple of hours to get her back to sleep after that and it only lasted 30 minutes :( her pulse ox came off of her toe and the night nurse came to check on her and felt to talk in his everyday voice so she was really up again. He then asked "so her Downs is severe?". I was too tired to spew out my speech about the subject so I just gave him a very adamant "NO"! Addy wanted nothing to do with going back to sleep so we I pulled her into my bed but she just could not get comfortable. So we tossed and turned for quite awhile before we both drifted off to sleep. We were woken up at 4 for vitals and CPT. I had to go to the bathroom so I put Addy in her crib and got a very sad little face :( Once I came out she was back to sleep though :) So we got to sleep until about 7 so not a horrible night but definitely not the best!

She had a good morning but she is drooling like crazy due to this whole tongue issue we have going on! I have been cleaning her mouth like crazy (pulling off the dried crustiness) so it is MUCH better today! I really think once that cannula is gone she will pull her tongue back in. When she's asleep it's right where it should be :)

My mom called and wanted to do something to help so I sent her on a mission to find some pajamas that were short sleeved (to go over her IV) with long pants since we are going through 4-5 shirts in one afternoon! She showed up with 5 new jammies for the darling girl. Grandmama's got style! A friend of mine from our Down syndrome group came for a visit too so it was a nice morning.

We were sent to Radiology for a repeat chest x-ray. It didn't show any improvement :( Her left lung has more pneumonia than the right so the doc ordered the vest things to rattle those lungs. About two this afternoon I turned off all of the lights to attempt to get Addy to nap. Our nurse wanted to try to lower her O2 levels once she was asleep to see how she would do. She finally fell asleep all over my left arm :) I told her to take a nap and she signed "no mommy sleep" lol. Stinker! The nurse came in to lower her O2 and saw that she was on a new regulator and was at 1/5 of a liter and we didn't know it (the RT had changed it)! She had been doing just fine too! So she pushed her down to 1/10 and was doing really well. A little later she went to 1/20 and that's where she is right now! Woo hoo! She had one "massager" treatment before I left. She didn't care for it too much! Scott just texted me to let me know that she has a new pulse ox probe and is satting 96-97!!! YEAH! If we can get this girl off of O2 we will get our walking papers! Hoping for tomorrow but planning for Monday :) Scott took the night shift tonight and will stay with her through Monday if needed, I have got to work Monday, so many things to do! Not to mention the fact that thanks to my tonsillectomy I have NO sick days so I am being docked for all days missed :( 3 days last week, not going to love my paycheck this month :( big OUCH!

Teenagerless!

Today my beautiful daughter turned 20 years old! I hate that I wasn't able to see her this week to celebrate her birthday. The kids and I were going to head to Joplin to see her on Monday but a certain little princess got sick :( Thankfully Jarika completely understands and knows that I will be out to see her as soon as I can! I stole these pics from her Facebook, I LOVE this girl!

Still here

Addy didn't have a great night or day today. They had to suction her nose a few times, she is really gunky. This morning when she was suctioned it got to be a big bloody mess :( They didn't even try to lower her O2 today, they had to go up to 1 liter through the night when she was so clogged up. She just wanted to be held all day today. Don't let the pic fool you, play time only lasted about 10 minutes this morning. The afternoon was awful, VERY cranky and lots of coughing. Fortunately the coughing is a good thing! The video is terrible but I couldn't see what I was doing lol! I have no idea when we will get out of here, I'm hoping for Sunday but I am very aware that it is most likely Monday or Tuesday :(

Inpatient Day 4

Addy's "snot" test and her bloodwork came back today. The only thing I found out is that she has Metapneumovirus. It's going to take her awhile to get over it :( She didn't have a great night last night but today was a good day. I got some smiles and giggles. She even showed some of her spunky little attitude that I've been missing!

I was able to keep her awake except for 2 minutes so hopefully she will sleep for Daddy tonight. I gave her a much needed bath this morning, she smells so much better! The nurse tried to lower her oxygen to 1/4 liter and she kept dropping below 90 like crazy so she had to go back up to 1/2 liter. The doctor didn't think she was ready to try to wean again but she thought she would just lower it a little, obviously that didn't work! So she will continue to be inpatient until she is off of O2. I would LOVE for her to get off of it because I'm about to go crazy with the major tongue protrusion we have going on. She will NOT put her tongue in her mouth! We haven't had this issue in years so I'm really dreading breaking this once we get home. I'm really hoping that once the cannula is out she will feel back to normal and close her mouth. Her tongue is getting a serious beating. It is so dry that it is cracking and peeling. It's really gross I tell ya!

We are probably looking at Sunday at the earliest. Scott is taking the night shift again and I will head up in the morning. I'd love to be able to walk her around the halls but everyone else on the floor appears to have respiratory stuff too so I think we'll just stay nice and confined in our ugly green room :)

Day 3

Scott stayed with Addy today. I called her pulmonologist this morning to let him know that she had pneumonia. She was discharged from pulmonology over the summer but he did want to know if she had pneumonia. I love his office (happens to be Addy's pediatrician's office too :). Anyway, they immediately transferred me to his nurse and she said that he was in the hospital making rounds and she would page him. I texted Scott to let him know that he may stop by. He was already there :) He ordered several tests to make sure we are treating Addy the right way. He ordered a complete winter viral panel, RSV, and wanted to check her immunity. They also took stool to make sure that she hadn't developed C-Diff from all of the antibiotics she's had. That's almost a given with her but I am praying that she doesn't develop it. Scott said they suctioned a lot of gunk out of her nose today and she was none to pleased about it! Sorry I missed that one! The nurse said that it was really thick too :( My poor baby! They did try to discontinue O2 but she went back into the 80s so that was a no go. Jake and I went up to visit tonight, he is really missing his baby sister! We cuddled for awhile while Daddy had a tiny break! Addy only slept 30 minutes last night :( I really hope they get more rest tonight! I will spend the day with her tomorrow. If she has to stay another night, which I'm pretty positive she will, Scott will spend the night again and I'll spend the day with her on Friday. I would love for her to get to come home tomorrow but I think that is doubtful :( Please continue to pray for precious girl.

Day 2 Inpatient

Addy had a rough night a pretty good morning and very rough afternoon. From about noon on her heart rate was high and she was cranky and just wanted to be held in one position. For hours! My left arm is still numb and my right is beginning to get it's feeling back into it!

Whenever I moved her a tiny bit she would start crying and crying :( She will not close her mouth since getting her cannula and her mouth is soo soo dry. I tried several times to give her a drink and that was an absolute no go.
She also has her IV on her right arm and she is keeping her head tilted to the right and won't move it, I think she thinks she can't move. She won't move her right hand at all. (She's like that when we put a coat on her too :)

She spiked a fever and wasn't the same since :( I am now home with the boys and I'll go to work tomorrow, Scott is with her tonight and tomorrow. The doctor thought this morning that there was a chance she would go home tomorrow if she was able to get off of O2 today but when they tried to take it off she desated. Her cannula came off while she was sleeping and almost instantly went to 88 so things aren't looking very good for release tomorrow. Praying for Thursday. Please cover Addy in prayer, I so appreciate it!

Pneumonia

I hate pneumonia! Addy has it in both lungs. It hit hard and fast! She started a tiny cough Friday night. Seemed fine Saturday morning with just a few episodes of coughing. When she woke up from her nap she had a temp of 102 which is really high for her. She seemed ok though! Yesterday she ran a temp around 100-101 and still just a little cough. This morning she had a temp of 99.6 and seemed very tired. Her pulse ox was 79, then 84 then 87. I gave her a breathing treatment and it went to 90. Still not good. So I took her to the doctor. Her ped is on a cruise but we saw the nurse practioner and I loved her! Addy really wasn't acting too bad, just puffy eyes and tired. She checked her out and said she didn't hear anything in her lungs but took her pulse ox and it was 89. They gave her another breathing treatment and it went to 91. They needed it to be above 93 to let me take her home :( The doc on call ordered a chest x-ray and had me take her home since it was almost lunchtime. So we got home and waited for the call. Sure enough Addy had pneumonia in both lungs but they felt it was viral, however, wanted to start antibiotics and more nebs. I was to monitor her all afternoon and let them know if she fell lower in her sats or acted worse. After her nap her pulse ox was 85 :( So that got us a one way ticket to admission. So here we are in the hospital :( Her x-ray from when we got here was worse than the one from the morning. So she is on IV Rocephin and continuing oral (lol g-tube) Zithromax and one other IV antibiotic. Her sats are now okay on 1 liter of oxygen. Her heart rate continues to climb at times so that's a little worrisome but not too bad. They took labs and I'll find out soon if they show anything. Prayers appreciated for my baby girl!

Fevers are frustrating!

Addy woke up after her nap yesterday with a fever of 102 and it hasn't been under 99 since. She has a mild cough but no other symptoms. She's acting pretty good when her fever is below 100. I don't think she has an ear infection but I can never be sure with her. If she's spikes up again tomorrow it looks like we're heading to the pediatrician. Thankful that I actually ahve tomorrow off for the first time in about 15 years!

She's trying so hard to dress herself, she cracks me up!

Twenty-One Cakes!

(Addy hanging out in the comfy chairs at Twenty-One Cakes)

If you've read my blog for awhile then you have seen the amazing cakes that my friend, Annie makes! Not only are they amazing to look at, they are beyond delicious! She is opening her new bakery this weekend, Twenty-One Cakes :) We got to go tonight for a special for friends and family! Scott and the boys had amazing chocolate cake and I had two mini cupcakes, one chocolate fudge and the other was oreo! Soo yummy! Too bad my crazy girl doesn't eat cake! She has no idea what she's missing! If you are local at all, tomorrow is Annie's grand opening in Nixa, you MUST go! 10% of her proceeds benefit the Down Syndrome Group of the Ozarks as well!

So Proud!

It was grade card day! I'll give the run down if you can't read the pix :)

Communication Arts/Reading Readiness
The student can tell the name of the upper case and lower case letters in random order.
2nd Quarter:
Addy identified all upper case letters with the exception of Q and S (she does know S however!)
She identified the following lower case: b, e, i, j, o, r, s, t, v, w, x, and z.

The student can recite the entire alphabet correctly.
YES
The student can identify their name from other names that begin with different letters.
YES
The student can identify their name from 3 other names that begin with the same letter.
NO

Mathematics/Science Readiness
The student can count out loud without error.
Addy counts to 15 consistently

The student can count objects without an error.
She counted objects to 6. We can usually get her to 8 but on assessment day she went to six :)

The student can identify the following colors by naming.
Addy named green, blue, purple and brown. However, her teacher knows full well that Addy knows all of her colors ;)



The student can sort objects by colors. (goal 4 colors)
Addy is sorting 2 colors with 80% accuracy.

The student can identify the following shapes by matching.
Addy matches square, triangle, circle and rectangle.
The student can sort objects by multiple shapes.
NO
The student can position an object in front, above, behind, above and below.
NO, Addy will put an object "on" another

Motor Development
The student can hold a pencil correctly.
Sometimes, uses both hands (she truly prefers the left)
The student can color in the lines.
NO
The student uses scissors effectively.
EMERGING, she snips ;)

Social/Emotional Development
B=Beginning D=Developing M=Mastered
Respects Classroom and school rules: D
Participates in group activities: D
Shows self-confidence:D
Takes care of one's needs: B
Gets along with others: D
Copes with frustrations and failures: D
Knows first and last name :D knows her first name only

Work Habits
Listens attentively: D
Follows simple directions: D
Has good clean up habits: B
Stays on task: B

I am very pleased with Addy's progress! She is doing so well, what an amazing little girl she is :) She is blessed to have such a wonderful support system at school. Everyone loves and adores her and encourage her so much! All of her teachers are wonderful to help encourage things we want at home to carryover at school. We are hitting the potty training big time and she has done phenomenol! She didn't have any accidents at school today :) Hoping in a few weeks we will brave the no pull-ups!

Feeding

If your child doesn't have feeding issues you are soo blessed! When we adopted Addy she had so many health issues that I really didn't worry too much about the fact that she had a feeding tube. I knew that someday she wouldn't have they oxygen, colostomies, pulmonary hypertension, and obstructive sleep apnea. The tube was another story. I knew that it would be a long time thing. I was seriously hoping that she wouldn't have a g-tube by the time she was four. That didn't happen and I knew then that hoping for age 5 was a dream. Addy started feeding therapy in November of 2010 and has made tremendous progress. I wanted Addy to accomplish three things before kindergarten. I wanted her to walk :) she's doing that! I wanted her potty trained, (see my 365 blog for that info) and I wanted her to not have to have a bolus feeding during school.

I'm not sure if that's going to happen but she is making so much progress. She is presented food with each tube feeding. She doesn't eat very much but at least now we are putting the spoon and food in our mouth without freaking out. She is tolerating Stage 3 foods pretty well too. She does freak out when a big chunk actually gets swallowed though. She doesn't mind it in her on her lips or in her mouth but does NOT like to swallow it!

Addy is really trying to be more independent. She really wants to feed herself but she just doesn't have the wrist rotation to use her spoon too well. I finally got in some curved spoons I ordered her. I had looked all over Springfield for them and couldn't find any so I went on and ordered them just after Thanksgiving and they just arrived this week! She is LOVING it! She does much better with her left hand so that's the only spoon I'm presenting her right now. The actual spoon is a little big for her but she is using it so I'm not complaining! She did great with lunch today, I can't wait to see what she's able to do just before school starts!