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Friday, April 29, 2011

More than just asleep

So today I had my first stranger acknowledge that Kira was more than "just asleep". I am sure strangers have wondered, as we pass them, but still aren't quite sure. This gentleman today, did not verbally acknowledge, but it was clear by his actions, that he knew. I was still at the Doctor's office, about to enter the elevator, and he was standing behind me. As I entered, I reached to hit the 1st floor button, but he eagerly extended his hand to press it for me. Right as the doors closed, he bent down to her, held her hand and said sweetly to her " Hello Sweetheart. Hello Sweetheart." I told him that she does not wake up, but she can feel him, and he gave me a gentle, understanding smile. As I walked away, I realized, " Wow, that was the first time." He was the sweetest man. If only everyone out there had that kind of soul. :)

As for her appointment, it went very well. She is doing fantabulous. Dr. is pleased with how clear her lungs sound, and we are going to restart her Robinol. Robinol is an excellent drug. It thickens and dries out her secretions. This equals less drool=less aspirations=less hospital admissions. As we were waiting for her Dr. to enter the room, we got bored and decided to link her sausage fingers and see how long she can stay like that. She wanted me to take a picture of it ,so she can show people how cute her wittle fat finders are. So love this girl!

Wednesday, April 27, 2011

The "R" word

This is a wonderful platform for me to speak about this nasty word. I have had many verbal conversations with friends and family about it. Somehow some of them get offended at me for asking them to not use it in my presence. Simply baffling. I realize the majority of people who call someone, something, or some place retarded, do not stop to put the connection between a mentally retarded person and someone who is acting goofy. But I ask you, DO stop and think of the connection. When you are referring to someone as being retarded, what are they doing that makes you desire to use that particular word? Are they being stupid, do they have a weird facial expression, what is it? There IS a connection. What's even worse is when people involve the kinked wrist against the chest motion. Ugh, makes me cringe. See, Kira is mentally retarded. She has the kinked wrists that she pulls up to her chest. This is a natural position for your limbs to take when the brain to body communication isn't smooth.  It is so very hurtful to me when I hear people use the R word lightly and derogatorily. I have an Uncle with Downs Syndrome, so I didn't suddenly become an R word hater within the last 5 years. I have however, become much more passionate about it.
I know you all love and care for Kira, and I also know you wouldn't act in a hurtful way in respect to her on purpose. I am simply asking my readers to please think about this word, and find an alternative whenever you feel the urge to spew it. I'm trying to think of a funny example to perhaps show you from a different light, but alas.. I am still suffering from sleep deprivation and I am only on my first cup of joe. My funny bone doesn't activate until at least half a pot is down the hatch.

Tuesday, April 26, 2011

Cocoon Girl

I have always associated butterflies to Kira. When I was pregnant with her, I decorated her nursery with butterflies hanging from the ceiling. There were also garden bugs, flowers and more butterflies!  I came across an image a few years back that I instantly loved, and found so fitting for my girl. Kira is just like a butterfly. She is trapped inside her cocoon, trying hard to flap her wings inside, and one day, she will emerge. Her break through consists of two paths. Whichever path she takes, I believe, she will be fully awaken.


Sunday, April 24, 2011

Happy Easter!

Happy Easter from the Perrymans to the world! Today is going to be a great day! Kira is improving, I get to spend the day with my boys and my family at my Momma's house, and I get to GRUB! I left the hospital at 5 a.m. this morning, got here and Jim and I saw a furry white creature hopping away from our home. Could it really have been.....? Jim then left to be with the Beauty Queen. I fell back asleep until Aaron crawled into bed with me. Awww, it feels like much more than a week that I have been able to shnuggle my baby bears in bed. I miss my family. Mr. Bunny hooked my babies up... more chocolate than their digestive systems can keep up with...score! I gave Sissy her Easter gifts this morning. This time, I did not spot the Easter Bunny leaving, but clearly, he had been in my room. He left her a soft pink piggy Pillow Pet, 2 silky cuff bracelets that Velcro on and have little toys hanging from them, and a bunch of large plastic eggs for her to hold. What's crazy, is that Kira is only 5, and this is her third Easter as inpatient. She has been in for a couple of Halloweens, maybe a couple of New years, but thank God, she has not yet been in for her birthday or Christmas. ( I don't think.) If you really know me, you know that my memory is atrocious, and I could very well be wrong here. Last year, we came close.. she was admitted on December 27th. This is our life, and if we have to have an alternative place to be on special days, I think Kaiser is a darn good one! There, she is surrounded by many who love her, and who she and I love. They are our 2nd family, and I am eternally grateful for all that they have done for our family through these 5 years. Thank you Lord for all of your many Blessings! Hope everyone has a fantabulous day, filled with love, laughter, bonding, Praise and food. Lots and lots of food! xoxo

Friday, April 22, 2011

Back in


The theme of this post will become very familiar for you readers. Kira is currently in the hospital. She has been there for one week. I tried to blog from my cell phone, but I could not post, only read. I usually get decent sleep when she is admitted. I will usually make sure she is dry, comfy, all meds and meals are given, and crawl on in. I have become used to the middle of the night room traffic, and can sleep right through it. My eyes don't usually pop open unless her alarms are going off or she really needs a good suctioning and she is loud enough to wake me up. For whatever reason, I am not sleeping well, so tonight, Jim and I switched places. He will be on baby girl duty and I get to spend time with my boys and sleep like a rock tonight! Kira has a weak swallow and not much of a spontaneous cough, so the most innocent of colds can and usually do turn into pneumonia for her. It can feel like I am spinning my wheels and fighting against an impossible force, trying to keep the cold from getting nice and cozy in her precious little lungs. I can be as aggressive as possible with her.. shaking and pounding on her lungs, inhaled therapy, deep suctioning down to her toes.. it doesn't seem to matter sometimes.  This admission is not pneumonia however, but more of a viral bronchiolitis.  She has a mild collapse and inflammation going on in there, and her secretions are just ridiculous! TMI warning... if you have a cringe factor, turn away now. Her secretions are so thick, that the suction tubing keeps getting clogged, and stops dead in its tracks when it comes in contact with it. When I am able to pull one of these  ( let's call them critters) critters out, I can literally keep pulling, taking turns with either hand. Heave-ho-heave-ho. Once one of these critters waves it's white flag, and releases it's relentless grips from my daughters nostrils, I like to swing it around the room, like a lasso. this is my celebratory defeat dance. She has been on c-pap for over 24 hours, in hopes to re-inflate her left side. Hopefully, she will tolerate being taken off and moved to either normal wall 02 ( oxygen) or the Vapotherm machine. This piece of equipment is wonderful! It supplies necessary  pressures of 02, while at the same time, giving off a warm humidified affect. I am so sorry, I want to write more, but I exhausted. Will update soon. :)


**** Today is the 25th and she came home this afternoon. Woohoo. I so love this part. Feels amazing. Somehow, it feels like it has been a year since she and I were here with nowhere to go and could cuddle, clean, or just be lazy dogs. In reality, it has only been 10 days. Kira is doing pretty darn good. She no longer requires oxygen support, but is also not satting at 100%, like she does when healthy. She is holding her own, in the mid 90's. She is comfortable, and breathing peacefully. I will continue doing her respiratory therapies, just as they were scheduled in the hospital, until she is back to her Miss Sassy pants self. We met a few new friends and Momma even learned how to do a fish bone braid on her. I think that fish braid seems easier than the french braid. I suck at both, but I suck less at the fishy one.

Thursday, April 14, 2011

Diaper bag

Today, I bought Kira her first full sized diaper bag. When I was pregnant with her, I bought a chic, black, backpack style diaper bag. After that, came a few small pink and brown bags.. some with polkadots, one with Tinkerbell, and a tote from the Disney Store with Disney Princesses on it. But tonight, as I was in the diaper isle, I took notice of the cute diaper bags they had. Then the thought shot through my mind, why don't I use a diaper bag, a REAL diaper bag for Kira? After all, she is in diapers, needs wipes, a slobber rag, change of clothes, meds, blanket, milk and the milk's vessel. I didn't want to get something too babyish.. I mean, c'mon, her's an old lady now, but I did want cute. I absolutely love the bag I bought. It is a messenger style bag. It's tan, suede feel, with a pink butterfly, flowers, heart and ladybug. I cannot believe everything it holds.  I packed it tonight with 3 outfits, socks, her CD player, 2 cans of milk, her tube, diapers and wipes and her pink & brown polka dot blankey. I was wondering what other parents of special needs kiddos carry. Backpacks, diaper bags? I don't know, maybe next month, I will feel like she is too grown up for this and kick it down to my niece, but right now, it's fun and a bit nostalgiac to pack a diaper bag!

Wednesday, April 13, 2011

Kira's birth video

I don't want to post the video here, show's a bit of thigh action, but is otherwise "decent". But if anyone wants to see it, let me know, and I will shoot you the link. I made it years ago. It's a video montage created at One True Media. For those who do watch it, do not be alarmed. She is referred to as "Sophia" in it. I promise, it IS my video, not stolen! She was Sophie bear the entire pregnancy and for the first 24 hours of her life. When it was time for pen to hit paper on the birth certificate, I decided to give her the name that Jim loved, because she was going to be a Daddy's girl.

Let me catch you up

So, the last story I wrote about Sis was 3 years ago, so I will try to do a quick catch up here. She is currently only on 2 pills.. Baclofen, for her autonomic storms, and Klonopin, for her seizures. She also gets Albuterol and Flovent daily through her air chamber puffer. I give her Miralax as well, for her chronic constipation. She has always been hypertensive, needed 2 high doses of blood pressure meds daily to keep it under control. But last year, we did a trial run, and she is mysteriously able to go without any hypertension meds at all now. She still runs a wee bit higher than the typical child, but it's a safe number for Kira.

Kira has seizures all day, every day, and I have accepted that nothing will change that. We have tried next to every anti-convulsant out there, and I put her on the Ketogenic diet in hopes to gain seizure control. While the diet was actually the best treatment thus far, she still seized hourly. She kept falling out of ketosis, even when I was being strict. Then when she developed RTA ( Renal Tubular Acidosis) I just changed back to pills for treatment. The Dr. assured me there was no connection between the RTA and the diet, but I had had enough. On a great day, Kira will have say, 2 or 3 seizures an hour. On a typical day, Kira has about 5-10 an hour.  When she is sick, she literally seizes back to back. Her last hospitalization, we could not get that girl to stop. We drugged her up so much, that a herd of cows would have been down for the count. Her little stubborn brain was in it to win it though, for some reason.

Something that HAS improved is her response to pain. In the past, it didn't matter where you stuck her with a needle, she would lay there as if she were as snug as a bug in a rug. Now, she lets you know, " THAT HURTS!" She will posture, and even grunt if it's really painful. Last year, while it broke my heart, it also made me laugh ( after I calmed down and pulled myself back together)... We could NOT get vein access on her. They tried and tried. Then they attempted to do a picc line in her arm, but it would not thread, so we ultimately ended up putting in her port. She has needed that baby all of her life, she has the worst veins I have ever seen. This port is a God send! Going back...so while they were poking her for literally 3 hours to try to get vein access, she was putting up a fight, she ended up at the foot of her bed! She was kicking her legs and fighting so much that my girl scooted herself all the way to the foot of the bed, I LOVE that. I hated it while it was happening of course. I actually had a couple breakdowns, but when it was over, I was like, "Go Kira, go!"

She is still *asleep*. Anyone who sees her thinks she is just a sleeping little girl, and they tell their children, "Shhh.. she's sleeping.". I no longer give each of these strangers my life story, I just smile and continue on my way. I used to feel compelled to explain to every single person who saw Kira her life story. It was ridiculous. lol If I was at the grocery store, and Kira was say, in my front carrier as a baby , and the cashier simply said, " Aw, what a cute baby." There I went with, " She does not wake up..I have 3 healthy boys.. nobody can figure out whats wrong with her.. she was born like this.. she seizes all day... yadda, yadda, yadda," Poor Strangers, what an awkward position I must have put them in. She just simply wanted my money and for me to walk away! Thank goodness, I don't do that any longer.. you're all welcome! ;)

Okay, it's "Late Start Wednesday" and I need to get the boys ready for school.

Tuesday, April 12, 2011

Pictures

16 weeks

Around 27 weeks






1st Birthday

Quick camera skills

Marathon & Diva Ride


EEG

Love cloth dipes!


Beautiful Elvis smile

They love their Sissy!

Rockin some make-up



My sleeping beauty with her sleeping beauty

Her kitty Lazlo ( They share a birthday)


My friend Kris at CooshieTooshies.com made this adorable cover

What Kira "eats"

Truth be told, I used to be somewhat of a "breastfeeding nazi". I was always an extended breast feeder, and tried to get all momma's to do the same, or at least to just nurse. Having Sissy, definitely changed my point of view. I am so Blessed to have a couple pictures of Kira nursing. I attached her to my breast right after birth, like I did my other children.  I also nursed her when she was a couple of hours old. Again, she did not open her mouth, nor root, but I was able to "get it in" :) I pumped my milk for her for the first 9 months of her life. It was getting to be too much for me, mentally and physically, so I changed her to formula. After not being able to nurse one of my children, and finding that formula is saving her life, my outlook on formula quickly changed. Now, if a new Momma tells me they are bottle feeding, I don't give it a second thought.. who am I to? 

Here are the yummies she has had in her tummy;

. Momma milk
. Infant formula (soy)
. Nutren Jr. w/fiber
.Ketogenic diet ( for seizures)
.Peptamin Jr. w/ fiber ( thought it would help constipation.. no go)
.Pediatric Compleat

She does not have any allergies nor limit to what she can eat. If I can liquefy it enough, and it can make it through her G-tube, we're golden! 

Kira's Beginning

I am going to C&P what I have already written in a different blog. Here, you can read about Kira's debut. Keep in mind, this was written in Feb. 2008, so some things have changed, including her medications.


I had a completely normal, uneventful pregnancy and delivery. She was quite active in utero, always kicked and did somersaults. All of the run of the mill pregnancy testing was normal, so I had nothing to think, other than I was having a healthy little GIRL.. WOW.. a girl! I have always wanted a girl. I absolutely LOVE being a Momma to boys. I love all that comes along with the ones with pork n beans. I had 3 awesome boys, and I wanted so badly to experience pink and butterflies and flowers.. ahhhhhhh!

I was in early labor for days, when I went to L&D to be accessed. They saw that with each contraction, her heart rate would decel a little. They thought it best to augment my labor with Pitocin that day. This was July 3rd. On a CRAZY side note, I had no idea until a year later that an acquaintance of mine ( now very close friend) was in the room right next door to me, laboring all night with me, and our kids are hours apart. Okay, so.. Kira Jean makes her debut on July 4th at 3:40 a.m. She weighed in at 8lbs 1 oz. and was 19 inches.

Right away, we noticed she wasn't opening her eyes. She did cry a little and move a little at birth, we couldn't tell immediately that she was any different, she just seemed exhausted from the ride. The time that I was in ignorant bliss would only last a few hours. During that time, we had family and friends come over to meet our daughter, it was great! When she was a few hours old, she developed a fever. The doctor had me remove her clothing, and told me that some newborns can develop fevers if they are dehydrated, so he wanted to offer her a bottle. As I was giving her a bottle, she choked up on the milk, and went purple. The nurse came in, and tried the bottle.. same thing. Okay, put the bottle away! So maybe an hour goes by and I have her in my arms, just cuddling, not feeding or moving, and I look over, and there she goes again.. desating! I freak, because this time, there is NO reason for that to have happened. A NICU nurse comes down to get her, to take her for an examination. At this point, her eyes still aren't open, and everyone is assuming its because they are swollen from delivery. They are also thinking the fever is caused by an infection somewhere, so they do a bunch of lab work to determine the cause. In my head, while yes, I am very afraid, I am thinking I only have a couple of obstacles here.... she has to become coordinated with a bottle, and treat the infection.. not too much to deal with, eh!

A day passes.. she has become still and quiet. Her eyes have not opened, she is not reacting to the outside world, and people are taking notice. On day 2, I notice her body almost shivering, but not. It was very mild, but I could see it. I told the Dr. who had already had a thought out conversation with me in his own head, and he asked me to sit and talk with him. Now, before I tell you what this conversation entailed, let me tell you, that I thank our Heavenly Father that I had my Mom by my side at that moment. She has been by my side from day one, and I really feel that I would not be who and how I am mentally without her. She has been my rock through out this journey, I love her so much, I honestly could not have done this without her, I mean it.

So, he sits me down and tells me that he suspects there is something neurological going on with Kira. He says he would like to do an EEG on her brain. I had no idea at that time what an EEG was, but I was understanding that he thought there was something wrong with my daughters brain.. WHAT?! I was shaking uncontrollably as he was telling me this, and her PT later told me she secretly thought Kira was having a seizure in my arms, until she realized it was me. They do the EEG, and I only had to wait a few hours before getting the results.. the horrible, gut wrenching, disgusting results. Here again is where Jesus put another Angel in my presence.. my Sister-in-Law Kim. I had just walked into the Nicu, and was at the sink washing my hands when he, the Neonatalogist walked up to deliver the results of her EEG. If I remember word for word, the conversation went like this.. "Are they in?" "Yes." "What are they" "It's very abnormal." "What does that mean? What does that mean? What does that mean?" This is where people talk about shock as being in a dream state. The room was literally spinning, everything went foggy, I went numb, and felt sick. My Sister Kim walked in RIGHT then. Thank you Lord. I sat down, and I remember him having his hands on my knees asking if I can hear him. Jim then came in, sat next to me, and I told him what the results were. All I needed to know is would she make it?! He could not tell me the answer to that. We went into my room and talked about what this meant, what testing they will do, etc. Kira did not suffer lack of oxygen at birth, there was no birth trauma.. so was it the one time I got into the hot tub for 5 minutes? Was it when I fell? Was it because I changed the cat litter? Was it the occasional coffee I drank.. WHAT caused this?! Here we are 2.5 years later and that question has yet to be answered. I am sure it never will, and I am okay with that now. Her EEG readings are extremely chaotic. They almost show a burst suppression pattern. The brainwaves will be all over the place, no organization to them whatsoever, then all of a sudden, show a flat line.. no activity. An analogy that a Neurologist once made to me about her EEG was, " Trying to read ANYTHING in her EEG, is like trying to hear a cat meow in the middle of rush hour traffic." Normally, in a persons EEG, you can tell when they are asleep or awake, if they react to outside stimuli, etc.. but not my girls.

Kira ended up being in the NICU for exactly one month. The whole time, she had to be kept naked, she kept her mysterious high body temp. If you were to even drape a receiving blanket on her, her temp would shoot up. She was placed on Phenobarbital for her seizures. An NG tube was placed for her feedings, although, back then, she would suck on a bottle some. She never did root, or open her mouth on her own, but if you placed your finger in her mouth and pulled down her tongue, then worked the nipple in, she would start sucking. She came home on oral feedings, but a month later, when I had to take her to the ER for what I thought were out of control seizures, she was found to be failure to thrive. I knew she wasn't eating a lot, she would tire out quickly, after a couple of ounces, but she *was* getting some. I did not know she was FTT. During her hospital stay, they placed another NG tube, and we got a feeding pump to take home. She gained 1 pound in a week in the hospital. Poor girl must have been so hungry :( The Intensivist changed her anticonvulsant during that hospitalization, and since almost that moment it seems, she lost what suck she had. This is at 2 months old. During her 1st year of life I would try the bottle, but quickly became very discouraged and depressed until I was no longer even attempting it. I very much regret giving up on her. I am certain she could have learned stronger oral behavior if I would have continued. When she was a few months old, she was diagnosed with autonomic dysfunction. Your autonomic system controls your breathing, body temperature, heart rate, blood pressure... consider it your "automatic system". This is what had put her in the hospital at 2 months of age with fever, arching, sweating buckets, breathing very fast and heart rate in the 220's. She was later diagnosed with autonomic storming. Her wonderful Intensivist in the PICU  hit the nail on the head. I held out my fingers, tapped each one as I told him, " Kira is doing this, this and this.." He placed her on Propranolol, amd that was the end of her horrible storms. Kira is on blood Pressure medication, currently Amplodipine and Captopril. She is no longer on Propranolol, because it butts heads with Albueterol, which she needed often for her pneumonia's. She is now on Baclofen for her storming. It has regulated her beautifully.

Forgive my bouncing around, but I will forget things, then suddenly remember, and so I may seem to go from present to past, and back to present. At 3 months old, she was put under to have a G-tube placed on her tummy, a nevus removed from her arm, a fundoplication done to stop her GERD from coming up, and muscle, skin, and nerve biopsies taken for testing. Kira has Microcephaly, which means her brain does not grow as it should, and her head circumference is smaller than it should be. At 2.5 years old, her brain is the size of a 2-3 month old. But everyone says you cannot tell. I think it was more noticeable when she was bald. If you saw Kira, you would think she was asleep. She appears to be asleep 24 hours a day. She has never woken up. She does not open her eyes, she does not have any purposeful movements, she does not eat by mouth or speak or cry. But she is the MOST precious, Heavenly Angelic being ever! She has seizures all day long, regardless of what medication or diet we have tried on her. She will lift an arm, turn her head, or roll her eyes open during a seizure. This is the most active I have ever seen her. It just doesn't make sense to me. WHAT is it that gets sparked in her brain during a seizure that allows her eyelids to open and her limbs to move, and why can't she do it without a seizure?! We have been Blessed to receive her beautiful pink and black wheelchair with her name embroidered on it through Alta Regional. They have also provided us with a Britax carseat, a bath seat and a Tumbleform chair. They have been such a Blessing. Her nurse Bruce has been trying to get me to accept respite care for her. That's where an LVN would come into my home for a few hours a day or week to help me with Kira. I have declined this whole time, because I figure she is mine, I am her Momma, why would I need someone to come into my home and take care of her? I do however see how it could be beneficial for me. They could do range of motion, massage, singing, rocking, etc. while I take care of the baby or spend quality time with Logan. Kira is currently on Baclofen, Captopril, Amplodipine, Bicitrate, Robinul, Klonopin. She has RTA ( acidosis) , and the Bicitrate evens out the acid in her blood. She also has a neurogenic bladder, which means she does not go peepee as soon as she feels the urge. Her bladder will hold it until its a huge balloon, then the flood gates will open. She urinates about 3 times a day. Her bowels don't work as they should either, so I have to give her daily Miralax to keep her stool soft, so she doesn't get compacted. Kira went from Nov. 06 to Jun 07 being in the hospital literally once a month with separate pneumonia's. It was then decided that she was aspirating her own saliva and she was placed on Robinul to thicken and dry out her saliva. She was also ordered a TheraVest. This vest is amazing! It fits like a life jacket, inflates like a blood pressure cuff, and shakes her lungs nice and clear. I'm sure she thinks I took her to Disneyland and put her on a roller coaster every treatment! Since she received a lot of steroids during those ill months, she had a beautiful side effect.. hair growth! Her auburn hair has grown so much. It's absolutely gorgeous. Its curly, soft, long hair. I'm SO jealous!