happy happy happy!

happy tuesday morning from this happy little boy!

here is a good shot of how is soft palate is closed. if you remember, i had a picture of how open it was (below) unbelievable huh? his hard palate still has stitches in it, so i couldn't get a good shot. this is mid laugh, so i was lucky to get this!

pumpkin patch and walking!

this year we decided to just head to the local farmers market to get our pumpkins....i missed going to the "fun" pumpkin patch, but there is always next year!

 i can't believe the boys are in shorts and short sleeves picking out our fall pumpkins...it ain't right.

lawon (3.5) wyatt (14 months)

update on wyatt:

he is doing FANTASTIC. sleeping longer than normal in the mornings--i guess not having a hole in your mouth allows you to sleep better!

he is eating a lot....i have forgone the gluten diet since something i am giving him i making his scar flare up anyway, PLUS he has to eat soft things and that is bread for him. if you are gluten free, you know that the bread is hard and not chewy like he needs now. once the month is over, we will go back.

jack took wyatt to his post op appointment because i was working and we are starting speech now instead of waiting until he is 18 months. also, we are going to get his allergies tested to find out the foods that he may be allergic too. otherwise, his palate is looking good and the stitches are still in place.

he is happier than ever!

AND, he started WALKING! october 14th, he took his first steps and hasn't stopped since. he still crawls a lot, but he likes walking! it is slow, but hey, he's doing it ;)

he is back at school and having better days there than before surgery as well. 

so, like i said, he is doing great! and i couldn't be happier ;)

i scream, you scream, we all scream for ice cream!

if you follow me in instagram and see us on a regular basis, you know wyatt is a screamer.

he can't tell me what he wants, therefore he screams. BLOODY MURDER.

i thought it was funny for a long time. now, the tables have turned.

friday we went to get ice cream and got kicked out. for wyatt screaming.

not joking. he wanted more ice cream, so he screamed. then he saw a ball, so he screamed.

then the worker came from out back ( we were the only ones in there by the way) and we laughed off how he had screamed and she said "well, sorry, you have to go or go outside, i suffer from panic attacks and i just can't handle that"

wtf. you work at an ice cream place where kids come all the the time and you suffer from panic attacks?

we were with our uncle carl and he said he had been kicked out of many bars, but never an ice cream shop!

she proceeded to say that he was "unruly". i walked the boys out with carl and went right back in to tell her a piece of my mind.

that my child was ONE. that he was born with a cleft lip and palate and can't communicate like other one year olds. that he is frustrated and is working as hard as he can to try and make sense on the sensations in his mouth with trying to form words. 

she could have cared less. just wanted us out of the store.

the manager will get a call from me on monday.

BUT, i am SUPER aware of it now. after that, i have started noticing it more, the blood curling screams are ridiculous. but, he will talk and i am doing the damn best that i can.

here is a little video...can you imagine if we were on a plane?? shoot me!

leaving the hospital

we woke on Friday and wyatt sounded great. the last treatment of me holding him really did the job. they think he was able to get more of the medicine since he was calm. by 7am, I was packed and ready to get out of there! if you know me, once I am ready to go, I am ready. early.

dr. Matthews came by around 8 and we were discharged! it took about 1.5 for the papers, so these guys look super thrilled.

 

 ready to bust out of the 5th floor

 3 tired peeps

I gave jack this hoodie for Christmas and I have been an Indian giver. what is it about big sweatshirts? I love them. doesn't look good, but I am a person that takes comfort over anything!

 

downstairs they had a dog there that kids could just pet...so cute!

 

once we got home, we unpacked and got settled. wyatt took a great nap and that afternoon, happy to in his own bed. later that afternoon, I took him on an nice, long walk  - it was beautiful out and I thought he needed some sun.

walks these days aren't very fun. he screams about 15 minutes in because he is used to having a snack of puffs, etc. he can't have anything like that for a month and he can't suck the crushers, so he just is just so mad. hopefully the weeks will fly by and we can return to our regular program ;)

 

day 2 in the hospital post palate surgery

after our 3:30 wake up call, wyatt was actually doing worse with his breathing. it was very loud, my mom (who is a PA) came in and freaked out a bit. she did NOT like the way he sounded. 

i was calm, because i have to be. i told her please don't freak out, because then i will freak out. you are a PA you have to keep your composure right? and then she said, i can't when it is my baby...

 he was still moving around and as busy as ever

 jack enjoying the hospital food as always!

dr. matthews came in around 7am and wanted the anesthetist and respiratory team to stop by. the nurse said when he does this (he is VERY conservative), you know he is concerned. 

respiratory stopped by first and gave him an epi treatment again, this was around 9:15. as you can see, he didn't like it.

 he is the problem. supposedly a steroid helps. is really helped lawton when he had breathing issues (wheezing) BUT dr. matthews doesn't like to give them because it can loosen the palate he just closed like it loosens the throat. i totally understood and def didn't want his palate to loosen, but, i wanted him comfortable. so, treatments we went.

 after she left the anethetist came in and wanted to monitor him for 6 hours. no treatments. so, we waited. 

 he napped on us, and he breathing was still loud. after about 2 hours, he needed something. we were def not going home tonight. ;( i was glad we were going to be in good hands...there was no way i wanted to return to the ER at 4am with him after just leaving. 

 by this point, he needed a steroid. dr. matthews finally gave in and said ok and he got one. unfortunately after a few hours, that didn't help either.

while we waited for another treatment, there was a "tailgate" party for patients, and we were allowed to go down and see

 it was so nice to be outside and get some fresh air!

 smiles were there, he was so happy to be out of that room

 around 6, he got another treatment, but this time, i gave it to him. he was calm and able to take in more of the meds and that was the trick. he sounded SO much better after this one and slept all night without any issues

dr. matthews stopped by at 9pm after all his rounds to listen to him. 

now, i love this man. i know i have made people aware of that. i am in awe of him, how wonderful he is, how he does this for children, how he works at all hours and never looks tired. well, jack asked (in front of him) if he should marry us. OMG. i think i was telling him something how i loved him. but jack!! at least he is cute, because i was slightly embarrassed! but not really, i cry almost every time i see him and i give him a hug every time i leave him. he even tried to shake my hand after wyatt's surgery this time and i said, shake my hand?? i have never shaken your hand, give me a hug! 

oh lord.

waiting and recovery

we took over the small part of the waiting room again and again, it was a beautiful day.

dr. mair came out only 30 minutes after they started and said the t-tubes went in perfectly. there was a chance that they wo0uld be too big, and he would have to put in regular tubes, so this was a good thing.

then, dr. matthews appeared and my heart dropped to my toes. my exact words were "what are you doing out here??? he is ok right???"

the man came looking for those damn nose tubes. well, we left them at home thinking the poor child would get a break on surgery day. not so much.

my parents ran home and searched for these cleat tubes all over my house because of course, i had no idea where we put them

facetime with your parents during your kids surgery is not recommended.

BUT, they found them, brought them back and someone got them to dr. matthews.

 in the meantime, my friend katherine stopped by and brought some wonderful snacks for us. i didn't have anyone come and sit this time because 1. the surgery was only 2 hours and 2.  i had been with my children for 10 days straight and was looking forward to reading and talking. the time went by likethat. so fast.

around 8:30, 9 (i can't recall), they told me he was in recovery.  dr, matthews came out and said he did great. he closed most all of the palate but couldn't get right next to the tooth on the left. he will be able to get there once he has grown and they put bone in his palate. he also said that they are having better success with using cadavers than the kids own bones and that that surgery will be when he is around 4. next up will be orthodontics and speech. 

he told me that his scar shouldn't be this red and puffy and that it has to be something in his diet. we will be seeing an allergist that he recommends soon.

he told me in a few months to be very hard on wyatt about his words. to not give him what he wants by screaming and pointing. try to make him say the words. he says cleft kids tend to be very lazy in speech, which we will start at 18 months.

all in all, great news. no surgery that we know of anytime soon. RELIEF.

still roller coaster rides, but we will happily take those.

last time we had to wait about an hour to see him, this time, they took us right back.

this is how we found him but in a nurses arms.

 he was breathing very loudly, which meant that needed to be taken care of. basically, his trachea, which is very small in the first place (he has tracheomalacia) was bruised and hurt from the tube down this throat during surgery, therefore was swelling and he needed these epinephrine treatments

 do not let these calm pictures deceive you. after holding him for about 2 minutes, he started thrashing about and moaning/crying. i stood most of the time trying to calm him down. he wouldn't go to jack and he would be calm for a minute with me, then kept thrashing about. you could only have 2 people in the recovery room at a time, so when jack went out to get me a drink, my dad came in.

 once my dad started talking to him, he immediately calmed down. like, shockingly stopped crying and stopped thrashing. he went to my dad for the next hour and just sat on him like this. he wouldn't let any of us sit down though, but this was a sweet sight. 

 my boys sure do love their pap ;)

once we were moved to our room, he took a few good naps

 with a lot of drool and sweat

around the late afternoon, he was ready to move a bit

 i was thankful that he isn't walking yet because he wasn't actually steady when he stood from all the meds

 we took some wagon rides

 and Libby stopped by in the early afternoon and brought some treats for the boys. this bucket was a hit! wyatt was napping on jack, so libby and i were able to go downstairs and get some lunch and bring it up to the room to catch up. it was nice to stretch my legs and eat finally.

 sus came by after work and read some stories and was another great distraction. the red is wyatt's nose bleeding. it bled for 2 days with just the drainage from the surgery.

that night his breathing was not better. he hadn't had a treatment since right after surgery and around 3:30am he woke up breathing very loudly and strained. i called the nurse and she called dr. matthews, who happened to be on call,  who then ordered to have more treatments for him when needed. by this time, his antibiotics were done and as well as pain meds. it was all up to the trachea to get better.....

needless to say, we all didn't sleep well with me being in the tiny crib with wyatt and jack on the couch, but we knew these sleepless nights we going to be upon us!

pre-palate surgery

time for wyatt's second surgery....wednesday october 2, 2013 7am

this time i wasn't nearly as upset and nervous. the worst had to have been behind us right? 

last time, i was losing the cleft and face i had known for 7 months, i would be sleeping with him for 5 weeks after to make sure he didn't roll on his face, i changed tubes, gave pain meds, you name it.

this HAD to be better. 

so, i wasn't very nervous until a few days before and that is normal for any parent.

wyatt had to eat a big meal the night before in case he was hungry before surgery.

 we said to hell with the gluten and dairy free and he ate 3 slices of pizza, oranges and a bottle. this kid can eat!!

we arrived at Levines at 5:30 and got started.

 he was very confused....why am i here again??

 there was about 1.5 hours of waiting, so we took some strolls in the wagon and played with some toys, anything to keep him happy and not thinking about food

 we even got to talk to uncle trent in London!

 my parents came and were another great distraction for him. wyatt LOVES his pap. goes to him so easily and just loves him. this pic was taken after they gave him some meds to relax....we were tripping out at him!

 he was so giggly and making all these funny growling noises, you couldn't help but laugh, which in turn made things easier for all of us

 he went straight to the anesthetist and again, that was easy. no crying for me, he went right to her, smiling and off he went! 

and that is when i lost it. put my hands over my face, had a good cry, then pulled myself together and went to wait for my baby.

i will be honest...i wasn't nervous then. it is like flying for me. i am SO nervous days before, and esp the morning of. my teeth chatter, i talk to the pilots and my stomach is a mess. the moment the plane starts the fast drive into taking off, my stomach eases. isn't that so weird?? now, don't get me wrong, i may scream out loud at some bumps, but my stomach lets go. this is the only way i can describe how i have felt both times they have taken my son from me to surgery. 

i trust dr. matthews. now if only he could fly me somewhere every time i am to travel...

recovery next...