Merry Christmas!

Fiona is 2!!

We had a great birthday party with our immediate families! We had a HUGE party last year so we figured we would keep it simple this year!

She had lots of fun and got so many presents! We also had most people give her money so that we can buy her a swing set in the spring!

She has been obsessed with the Little Einsteins lately so that is what is on her cake!

I can't believe my baby is 2 already!

Boy, have we had a long week!

Well last Monday morning we headed to Pittsburgh (which is 2 1/2 hours away for those of you who don't know) for her Upper GI with small bowel series. She was not allowed to eat for 4 hours before it. We actually got back there on time. So now comes the task of getting her to drink the barium. She refused so we tried a syringe which backfired completely because she threw up like 5 times. So they ended up having to put in an NG to get the barium into her. She was pretty much hysterical the whole time. And they only allow 1 parent back (not that it would have mattered much because my dad was with me and not Tom). Anyway, it ended up taking about 5 1/2 hours for the whole thing, and it sucked because she wasn't allowed to eat that whole time. Results: she has some malrotation of her small intestine and it is no where near where it is supposed to be. But they somewhat expected that because of her O and said it isn't causing any problems. YAY!

We got home around 6. I was rocking her to sleep at about 9:30 and noticed she felt hot. Temp was 102.7. She never had a temp that high so we took her to our ER. When they took it there it was 103.2. They started an IV, fluids and antibiotic, and decided to ship her to Pittsburgh. By this time it is 2 am. I went in the ambulance with her and Tom went home. So we get to Pittsburgh at 4 am. Sit in their ER until 4:30 when they take her up to the PICU. She has been in the hospital so much that anytime someone even walks in the door she starts bawling. I couldn't even sit down (I was there by myself because we decided it would be best for Tom to get some sleep before driving and to go to work). They did blood tests and x-rays, etc. We had already known that she had a trach infection since the Wed before that, but they are saying that it was the source of the fever. So I had been up for 34 hours before I got to nap for 1 hour and then back up for another 6 until she went to bed (thank goodness for Aunt Di coming to visit us so mommy could get a little rest!). The next day she was pretty much back to normal so we thought for sure she was getting discharged. They had other ideas. They were concerned about her respiratory rate. I tried to tell them that she always breathes fast, but they wouldn't listen. She was not in any obvious distress, no nasal flaring, no retractions, and her O2 was good. Anyway they kept her another night.

She got discharged Thursday morning at about 10:05 and we had an appointment with the Feeding Team downstairs at 10:10. They were very nice and the one doctor kind of agreed with us that she is small, but looks healthy and it is not affecting her development at all. They still couldn't give us a reason for the gagging. Said to try putting her on a schedule, which has never worked with her. She now has the learned behavior of spitting things back out or taking them out of her mouth because she knows she will most likely gag on it. And for a long time I made her spit stuff out because I knew she would gag. Ugh, so no real answers there.We then had a cookie swallow at 2:15. And she wasn't allowed to eat in between the 2 appts. Cookie swallow was good though and she is cleared for all types of food.

Fast forward to Thursday night when we get home. She starts hacking up a lung, breathing REALLY fast, and her oxygen is low. Called her pulmo on Friday and they thought maybe she just had a cold. Got worse on Saturday so we took her to the ER. They saw "something" at the bottom of her lungs. So we left with orders for albuterol every 4 hours and constant oxygen until she is better. She was already on an antibiotic for the trach infection.

Today her cough seems a little better. But her oxygen still sucks. If I take her off she drops into the low 80's and sometimes high 70's. And the oxygen tubing SUCKS! The poor thing keeps getting tangled in it!

Some good news: She is AMAZING with her sign language. She is up to about 60 words and is picking them up really fast. She has also started to verbalize. She says "mom" "dad" "Nana" and "hide" which is her new favorite word! She also tries to say NeeNee, Poppa, and Zeus and will try to make any sound that you ask her to. She is trying to jump and it is the funniest thing ever! And despite being sick she is still her happy little self!

4th O surgery!

To make a long story short, Fiona's 4th (and final!) O surgery went great! Her amazing surgeon was able to get full muscle closure! She was only in the hospital over night again this time. She was up and walking the next day, which we thought was amazing! She sure is a little trooper!

This is from a couple days after her surgery.

And this one was to show how much has changed in a year! 9-21-10 was the night before her 1st surgery. And 9-21-11 was about 3 weeks after her 4th surgery. It is amazing to look back at how HUGE it was!

Her scar is healing up nicely and some day we will discuss giving her a belly button. Tom thinks we should leave her without one because it will give her good stories to tell, like that she was abducted by aliens, hahaha!

Where should I start?!

Every time I think I am going to be able to update more, it gets longer until I do haha! August was a very bust month for us, so let's see...

*We had appointments at the beginning of August with ENT and her surgeon.

*She had an appointment with her pediatrician on Aug. 10th because I thought she possibly had a UTI. Awful, awful appointment as I had to watch 3 people try for 30 minutes and were completely unsuccesful at getting a catheter in. So she had to come home with a bag taped over her lady parts to catch the urine for a sample. It ended up being nothing.

*She had a sleep study done on the night of Aug. 16th. That was another pretty awful experience. We had to be there at 6pm. We got through registration, talked to the doctors, nurses, and techs. So it was about 7pm and we had nothing to do until it was time for her to go to sleep! I have no idea why we had to be there so soon. We went and visited some of her NICU nurses, went to the cafeteria and got something to eat, and then went back up to the room and played and watched t.v. until about 9:15. The tech came in and started putting everything on her. She had electrodes stuck ALL over her! There were at least 20 on her head and face, 2 on her chest, 2 on each leg, 2 belts around her chest and belly, a nasal cannula, and a probe taped to her upper lip. I got her to fall asleep pretty fast but as soon as the tech came in to cap her trach she woke back up. Long story short- she could not tolerate her trach being capped and we had to take it off at about 1:15 am. She woke up a couple times and woke up at 5 for good and we got ready and went home.

*She had an appointment with her Pulmonologist on Aug 26th. She wanted to see her to discuss the trouble she has been having at night (low oxygen, apnea, etc.). And we got the results of her sleep study (I will get to them!).

(OK, I have been trying to write this post now for 4 days haha! No wonder I don't post much! So I will just post what I have and come back and update again when I can with the rest!)

Most Recent O pictures!

WARNING: O pictures below! You might not want to look at them if you get queasy easily!


This is Fiona's belly about a month ago (so 2 months post 3rd surgery). The open areas are the Gortex patch underneath. Like I have said, it doesn't cause a problem that it is exposed, we were just really hoping for it to stay closed this time. We (well we meaning me!) are changing the dressing once a day. I put wound get on it a couple times a week. That stuff just makes a mess and gets crusty and sticks to the patch, but I do think it helps skin growth so that's why I am still using it sometimes. I then put a non-adhering dressing on so that the top layer doesn't stick directly to her belly. Then I either put just 4x4 pieces of gauze on top and tape them down or 1 piece of gauze and a piece of Duoderm adhering dressing (this stuff is water proof and is what we put on when she is going swimming, but it also sticks better than the tape so sometimes I use it on other days too). She has had Pseudomonas twice since the last surgery, but it doesn't cause any major problems and easily goes away with the acetic acid treatments. Her belly is now even more open than it is in this picture so I will have to take a new one soon. I just discovered last night that the patch on the one side isn't even connected to anything anymore and that skin has grown underneath it!

Where have we been?!

I can't believe it has been so long since my last post! And I don't have much time because it is almost time for OT, so here is a quick summary!

It has been SO hot here. I don't know what we would do without our airconditioners. Funny story (ok funny now, not at the time)... the other morning I was trying to close the top window (we have really old window and they suck and don't stay up) and the damn air conditioner fell out the window. So we had to go buy a new one, got it put in, it worked for 3 hours and then quit. Stupid Walmart. So we had to buy another one.

Anyway, Fiona is doing pretty good. We can't seem to go more than a couple days without a trach infection, if it even goes away at all. The poor thing has been coughing so much and coughing inevitably leads to throwing up. I am so sick of cleaning up puke 5 or 6 times a day. And it's not just a little mouthful. Usually it is projectile-puke-up-everything-I-just-ate puke.

We are still having lots of eating issues. No one can figure out why she gags like she does. It's so frustrating trying to get her to eat anything.

Developmentally she is doing great though! I'm not sure how she is gaining any weight with as much as she throws up, but she is up to 16.5 lbs now! She is walking all around the house. I still can't just leave her be because she is still a little unsteady. We are working on pulling up onto things and getting up off the floor. Her PT told me that I need to let her play and explore on her own more, but it is hard when you are used to being right there for so long! And she is still very, very clingy. She is up to about 40 signs! And putting 2 together ("open, please" or "daddy, work" or "Zeus, bad" haha). She LOVES to swim! It makes me a bit nervous because we already had one water in the trach incident, but everyone knows to be very careful when she is in the pool.

We are down to only having nursing 2 nights a week so I don't get much sleep, but it's kind of nice not to have people here! She sees ENT on Aug 2nd and we are really really hoping that he says she's ready to decannulate! Keep your fingers crossed! She also sees her surgeon that day and we will probably get a date for her next surgery.

I will try to add some new pictures soon!

It's Always Something...

I mentioned in the last post about Fiona having to get another trach culture done. Well it came back positive for Pseudomonas (which is what she had on her belly that one time!), Streptococcus, and yeast. She was already on drops and an antibiotic and those seem to have taken care of the problem. Let's hope she doesn't start a cough again.

We are also having some issues with her belly. I posted the pictures of how the incision was coming open. Well now the other side of her belly is coming open. It started as very dry, flaky skin and we thought for sure it was a blister. Then it started to change colors and looked almost like a bruise. Then one morning it started to ooze and broke open. Not a blister though. It is where the Gortex patch is sewn underneath her skin. So every day that area opens up more and more. Soon I think most of the skin in the middle of her belly will be gone. Ugh. It's nothing horrible. We are just doing what we had been doing before with her dressing and everything. It's just that this time we weren't SUPPOSED to have to do that. And I was so looking forward to that. (I will try to post some pictures later)

On to some good news. Since the weather has been nice here, Fiona and I have been getting out of the house alot! Even if it's just out on the deck, it's so much more that we did last year. It's not even summer and I'm pretty sure that we have been out of the house more in the past 2 weeks than we were all last summer! She LOVES to swing and signs swing all day long (side-tracking, she is getting awesome at signing) and then gets mad at me if we can't go out if it's raining or too cold. I also bought her a water table for out on the deck and she loves playing with that too. We have had some exciting "firsts" in the past couple weeks also. She went to the park for the first time. And today was her first time swimming (we did have one little incident where she got a little water in her trach :/). But overall she is doing great! (She was 18 months on the 20th and is now 15 lbs 8 oz!)

So even when I think that things are bad I have to kick myself for forget for a second how lucky we are. Lucky to have such a beautiful, smart, happy little girl. I have met some amazing people in the past 18 months. They and their kids have taught me (even more that I already knew) not to take ANYTHING for granted. We are lucky that she can walk. Lucky that she can see and hear. That she can breathe on her own and doesn't need oxygen. That she is relatively healthy and home with us and not in the hospital. Even that she can pee and poop on her own! And most of all, we are lucky that she is here with us! So when you think you have it rough, just remember to never take anything for granted, even the small stuff :)

New O Pictures

These were taken the night before her 3rd surgery (in the hotel room!) with the dressing on.

This was a few hours after surgery.

This was 3 days post surgery (the incision was still nicely closed up).

These wer taken last night (1 month post surgery). The incision has opened at the very top and 2 places towards the bottom. The greenish part is the Gortex patch. The left part (well her right side) is very dry and flaky and we're not really sure why. We're hoping it's not a big blister because that would really suck!

Picture time!

And the story continues....

So remember how I said that after this past surgery we would not have to do belly dressings anymore? Yeah, so much for that. The Monday after her surgery at about 3 am she woke up crying so I went to give her a bottle and saw that she was SOAKED. I thought she had peed out of her diaper, but then realized it was coming from her belly. I got her out of her crib and layed her on my bed and there was GOOP everywhere. Her incision was draining. So I called the surgeon on call at CHP and we ended up taking her to our local ER at 4 am. They did a wound culture and he said everything looked ok. There were no signs or symptoms of an infection so to just keep in covered and call her surgeon in the morning. Just our luck, her surgeon has been on vacation this week. By Tuesday evening the incision had started to pull apart and we could see Gortex underneath (same as last time, except this time it wasn't SUPPOSED to happen). By Thursday morning a spot had opened up where there was no Gortex underneath and it was just her tissue popping through (BTW, by this point I had called Children's 3 different times). So I called again and that Friday we made a semi-emergency trip to Pittsburgh. The surgeon that we saw said it looks OK and we just have to be very careful that it doesn't get infected. We have to watch the bottom part that is just her tissue to make sure no intestines are coming through. REALLY?! THAT IS JUST GREAT.

So then we saw her surgeon the next Thursday and he said everything was fine. He said it obviously wasn't the most ideal situation because we didn't want it to come back open, but that it was ok. We just have to dress it again. We are putting wound gel on it (the same stuff we used at the very beginning) and the open spots are starting to grow some new skin! YAY!

2 weeks ago we had to do a stool sample because we thought she had some blood in there. We never heard back from them so apparently it wasn't blood. We are guessing that it was her antibiotic that was making it a funny color.

This past Tuesday we had to take her to get another trach culture. She had been coughing alot. And with coughing always comes more puking. I didn't get the results (I forgot to call today!) but they put her back on the Ciprodex drops in her trach and Omnicef (antibiotic).

Our next appointments aren't until June. We have NO appointments in May!!! We see her surgeon and Cardiology on June 2nd and then we will be staying over because she has a bronchoscopy which is done in the OR on June 3rd. At her last appointment with her surgeon he brought up the idea of giving her a g-tube. Definitely not what we wanted to hear. He said if she could have gotten one before, that he would have been pushing for it a long time ago. I agree that an 18 month old should not weigh 14 lbs. 14.5 oz (which is what she weighed yesterday YAY!). But all of her therapists agree that her weight and eating (or lack of) is not affecting her development. She is starting to walk!!!! She took 35 steps the other day and it starting to let go of things to walk to me. She is also signing like crazy. She has about 15 signs. She started saying please and thank you, mommy, daddy, Fiona, Zeus, swing, sleep, and lots more! She saw herself in the mirror the other day and signed Fiona! She loves being outside and tells me when she wants to swing. And last night she told me that she wanted to go to sleep.

Hopefully I can update more than I have been lately :)

Surgery Update

Surgery went very well! Her belly is tiny now! Even though the surgery went well, everything else was a mess. The hospital was so full and she has to be in the PICU because of the ventilator. Well the PICU had no beds available. So she was stuck in the PACU (recovery area) overnight, which not only sucked for her, but for us too. The PICU has seperate rooms, but the PACU is just one big open area. No privacy- just curtains, crying, screaming kids coming out of surgery, noisy, cramped, no t.v., etc. It was awful. She was in a lot of pain and was on morphine until yesterday afternoon. She got a fever during the night on Wed, but luckily went away by yesterday morning. Since she wasn't actually up in the PICU (but was being seen by the PICU doctors since that's where she SHOULD have been) it was like pulling teeth to get any answers. She was doing better by early afternoon yesterday and was eating and switched to Roxicet for pain instead of morphine. But they still made the decision to keep her another night without even talking to her surgeon. He is the one that should make all the decisions. So we finally got to talk to him at about 6 last night and he said that he was going to keep her until this morning, but because of our sitution (being stuck in the PACU) he would let her leave last night. So the good news is that we are home!!She is still in alot of pain and is kind of in and out of it from the pain meds. She didn't sleep well last night, which means neither did I! I washed her up and Nana came to visit which always makes things better! She is very stiff and her belly is a little bruised. But we finally got a couple of smiles out of her! It will probably be at least a few more days until she is back to normal.

Thanks for all your thoughts and prayers, we really appreciate it! I will add some pictures later!

T minus 2 days!

I can't believe it is almost time for another surgery! Like the past 2 times I am freaking out for the few days before! I get so anxious, nervous, overwhelmed, etc. Right now I should probably be packing, but I am blogging instead haha! I KNOW that everything will go fine. I have complete faith in her surgeon. We are so lucky to have him because he is awesome. Like last time I am more worried about how she is going to be post-surgery. Last time I was not even allowed to move away from the side of her crib without her crying. She didn't even want daddy (poor Tom!) she only wanted me and I couldn't even pick her up until the next morning. She was definitely alert and knew what was going on and probably will be even more so this time. It is really hard to keep a 1 year old entertained while laying in a hospital crib! We are going to be staying overnight again the night before like last time. Yay for another mini vacation :) We won't know what time we have to be there until tomorrow sometime, but I will keep everyone updated. Please keep her in your thoughts and prayers on Wed!!

Good News or Bad News First?

Fiona and Mommy play time!

Just being goofy!

Standing up playing like a big girl!

Happy St. Patrick's Day!

Bonding time with Daddy!

So we ended up getting an appointment with ENT last Tuesday instead of waiting until April.

Here is the bad news: She is not ready to get her trach out. She apparently has tracheomalacia. It is a "floppy airway"- or her airway collapses. It can either be congenital (she was born with it) or acquired (it happened from having the trach in for so long). We were so disappointed when he told us that she wasn't ready that we didn't even ask any questions. Stupid us because now we have tons of questions. We have no idea if hers in congenital or acquired. He mentioned it at her appointment in Jan, but acted like it was no big deal. But he didn't mention it after her scope in Dec. He said everything was fine. So we have no idea. If it is congenital there is a chance that it will get better on its own with time. If it's acquired there is a good chance that she will need surgery to fix it. Just what we need right? Please keep your fingers crossed that it fixes itself! She will have another scope in the OR in June to see how it is progressing and we will go from there. In the mean time we are thinking about getting a second opinion.

Here is the good news: We also saw her surgeon and he said she is ready for her next surgery! It is scheduled for April 13th! We can't believe it is so soon. Two weeks from today! He is hoping to get it mostly flat this time! He will also be replacing the piece of Gortex that is in there with a new piece and he hopes to be able to cover the whole thing in skin (because right now there are exposed areas of Gortex). That means we won't have to put a dressing on it anymore! And it shouldn't stink anymore, yay!

More good news: She is now signing a few words consistently. She says "more", "hat", and "dog". She is getting very good at walking (with assistance) and we are working on only holding on with one hand. She can now roll from her back to her belly and push herself the whole way up to sitting. Which is amazing because it takes a lot of strength to do that! We are also working on getting her to pull herself up onto the coffee table/couch. She cruises very fast around them now. We can't leave her anywhere now. We are so used to having an immobile baby! Well not anymore! She has learned how to do so much in the past couple months and is progressing very well.

Weight is still an issue. She was up to 14 lbs. 1 oz. the last time I posted. She is now back down to 13 lbs. 13 oz. She fluctuates a lot. Mostly depending on how much she throws up. We will be putting her on Pediasure 1.5 soon. The regular Pediasure that she gets now has 240 calories per bottle and the 1.5 has 350 calories per bottle. We really hope this helps because if it doesn't we don't know what we are going to do. I am going to have to get her 3-6 month clothes out from last summer for spring (if it ever comes)!

P.S. This was for you, Shannon :)

UGH!

We couldn't get into see Pulmonology and ENT until April 19th. They will be determining if they think she is ready to get her trach out. And it seems like that day will NEVER come! I was really hoping to get in sooner because of all the throwing up she is doing from coughing. But they can't get us in any sooner because we have to see both of them at the same time. We are just so frustrated with suctioning her every 15 minutes and her throwing up 5 times a day.

But despite throwing up that much she has been gaining a little weight and has finally hit 14 lbs! She was 14 lbs 1 oz the other night when I weighed her! She has also been chugging right along learning how to do new things. She can now roll from belly to back, scoot backwards on her butt, turn around in a circle while sitting, and push herself from crawling position to sitting! She has figured out how to do so much in a short period of time!

Yesterday was 1 year since we brought her home! HAPPY 1 YEAR HOME TO FIONA!

24/7 Mom Contest

Hey everyone! I just entered a Ester C's contest called 24/7 Moms. Just wondering if you could take the time to go vote for Fiona and I?! We have alot of catching up to do haha! Thanks to everyone who votes :)

http://ester-c.dja.com/pages/viewMedia.php?id=2135

New O Pictures!

I have shown some of these before, but I wanted to show the progress!
This was 3 days after she was born.

The night before her 1st surgery.

4 days after 1st surgery.

Before 2nd surgery

5 days after 2nd surgery.

Last week :)

Laughing Out Loud!

Surgery

Fiona did amazing with her surgery! We had to be there at 7:30 Wed morning. They took her at about 8:45. This was the first time that she ever cried when they took her from me and I was so sad! We were suprised when Dr. Burns came out to talk to us at about 10:00! This surgery was as involved or as invasive as the 1st one so she didn't get the same kind of pain medicine. She was already awake by the time we got up to the PICU to see her. She was NOT a happy camper though! She has been pretty clingy lately and being tired makes it worse. Well apparently having surgery makes it 10 times worse! The poor thing cried if I even walked away from her crib. And cried every time someone came into the room, even if they weren't touching her! She had to get an echo done while she was there and he came to do it that night. She was not very happy about it. She finally settled down a little and just closely watched everyone that came into her room, even the cleaning people! She was much more alert this time. And more aware of whether we were there or not. We had to wait until she was asleep to even go eat dinner. They let her eat a few hours after she woke up and was right back to eating normal (normal for her!). She had a lot of her NICU nurses come to visit her. She was showing off for them! She did so well with her pain and eating that they let her leave on Thursday! We couldn't believe it when they told us she could go home. We thought we would be there until at least Friday. She was still an extra bit clingy after we got home, but other than that she was right back to her happy, crazy little self! Her O is now about 1/4 of the size that it used to be. It doesn't stick out like a big ball anymore. It is just more of a bump now. Like she just ate too much, haha! We are still not sure how many more surgeries it will take. He is thinking probably 2. The next one he will try to get it all flat and replace the 2 pieces of Gortex patch with 1 solid piece. And then wait a little while for her to grow and the last surgery will be to fully close her abdominal muscles. We have a check-up with him next Tuesday and I'm sure he will be impressed with her like he always is!

She has been doing really well with her speaking valve and the cap. She can make noise now even without anything on. It's so funny to watch her because she knows she has to take a deep breath and then pretty much yell for anything to come out!

I will try to post the video of her laughing and the new pictures of her O soon!

Baby Steps!

This is Fiona's preemit outfit laying on top of her! She wore it when she was a month old and it was still big on her!

She wiggles herself from one end of the couch to the other to pinch Zeus, haha!

This is what happens when I leave my coupons on the coffee table and turn my back, haha!

Fiona had her appointment with Pulmonology and ENT on the 18th. The appointment went good, although not as well as we had been hoping. At first everyone was on board for doing the sleep study and getting her trach out! They were in the process of scheduling the study for Feb 1st. In the mean time they wanted to put in a smaller trach and have us start capping it off until then. Well we put the smaller trach in and when they capped it she didn't do too well with it. She had alot of "back pressure". Tom and I are still kind of confused about this. She was still trying to breath too much out of the trach instead of her nose. But how is she supposed to completely breathe out of her nose when the trach takes up most of her airway?! We have no idea. So they decided to cancel the sleep study. She still came home with the smaller trach and also a speaking valve and the caps. The speaking valve works by letting her breathe in through the trach and then the "diaphragm" closes and makes her breathe out of her nose. But this valve can actually go from completely open to completely closed. So right now we are at about 1/2 closed. She is tolerating it very well. We can gradually make our way to completely closed. We put the cap on periodically for a few seconds at a time. The cap makes her breathe completely in and out through her nose so it is a little harder for her, but it seems like she really likes to make noise! We will work with the valve and the cap getting her to breathe through her nose better for a couple months. We see them again in April and hopefully she will be ready for the sleep study by then!

She has been working on her walking and is doing really good with it! She now takes steps without us having to push the backs of her feet. She loves to walk around the house and I find her trying to get down off my lap because she wants to walk! She can also stand for a minute or so while playing with her music table or at the couch or coffee table. We are hoping that after her next surgery she will have better balance and will be able to take off!

Speaking of surgery, we have 3 days! I have the same flood of emotions as last time... scared, anxious, excited, nervous... I know she will be fine. I am mostly nervous about her recovery. She has become very clingy to me lately and I have no idea how she is going to react to the nurses and doctors. It gets worse when she is tired and sometimes cries even when I leave the room at home! I might have to sleep in her room (I hope not!). Tom and I just booked a hotel room for Tuesday night because the weather is supposed to be getting bad. It will be Fiona's first hotel stay and Tom said he is kind of excited. I told him that it is pretty bad that staying in a hotel in Pittsburgh the night before Fiona's surgery is like a mini-vacation for us! I guess we have to take what we can get!

Please keep Fiona in your thoughts and prayers on Wed! I will update to let everyone know how it went!

Goofball!

This is what happens when Fiona gets stuck! And she is also making the new noise she learned how to make!

Smarty Pants

Miss Fiona has decided that she is going to smack me every time I tell her no! She really likes to pull on the gauze on her O for some reason. Well I constantly tell her no and pull her hands away. The other night she smacked me twice when I did it!

She is just a big ball of energy! You can tell she just wants to get down on the floor and play. Hopefully soon! She signed her first word yesterday! I asked her how to say "hat" and she surprisingly did it for me! Luckily my mom was there to witness the 4 times she did it because now she won't do it anymore and won't even show daddy! We are working on walking with her and she is doing great. At the beginning we had to move one foot and she would move the other, but now she is moving both pretty well until she gets excited and then just hops! We have also gotten her to stand for a few seconds at a time while holding onto her play table

We have an appointment with Pulmonology and ENT next Tuesday (the 18th) to discuss where we go from here with the trach/vent. I can't remember what I said in the last post, but she is off the vent all day and can be most of the night. The only issue we are having is coughing from her being so dry. So when she starts coughing we put her back on. Her nutritionist is very worried about her lack of weight gain and so now is her Pulmonologist. We don't really know what else to do but to keep trying to get her to eat as much as possible. I weighed her this morning and she was 13 lbs. 11 oz. We really hope this doesn't interfere with getting her trach out. Tom said they better have a really good reason not to do the sleep study or he is going to be furious. We are both just so ready for the trach to be out and have somewhat of a normal life. We are so very lucky that most of her issues are not a lifetime thing. I can't imagine having to deal with a trach/vent her entire life. I have *kind of* gotten to have some normal nights with her! We only have a part time night nurse now. So on the nights that we don't have a nurse I take her in our bedroom and let her sleep in bed with me. (Tom is on 3rd shift, so it's just me and her!) I don't really get much sleep, but it is so nice to have her in bed with me! Tonight is one of those nights :)