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Friday, November 25, 2011

Update

While her Xrays don't look terrible, SHE looks terrible and sounds even worse. She sounds like a washing machine. One that someone put some chains and rocks in. She is working a bit to breathe, but will NOT cough it out. For whatever reason, her cough response is about nil right now. I am tormenting this child with the the tube.. in and out..in and out.. down her nose, down her throat..but only 1 out of 7 times I get a cough from it. We gave her an extra dose of Klonopin yesterday morning, as her seizures were doing their normal, " Our host is sick, let's go crazy!" activity. I think that obviously played a large part in her being more sedated and suppressing her reactions. But last night and today, that excuse can't be used. Perhaps she's just "over" the dang tube being jammed into her. No fevers really.. 99 this morning, but she has pretty much been normal. We have added the cough assist to her regimen of machines in this room, I don't know what else to add to get that junk out of her. Time. It's the only other option. Just keep shaking, pounding, suctioning, yelling at... her, and with time, she will get better. Oh, I yell at her, I sure do! I threaten too. Perhaps that's why she's not responding, she's like, "screw you!" and showing normal child "ignore" status.

Okay fine, as I do not yell at her, I do threaten. I threaten a butt kicking if she doesn't cough. She's not scared of me, as it hasn't worked yet! Anyhoo.... til' a later time......

Tuesday, November 22, 2011

7 months; part deux

Sunday was a super ugly day and night, that carried into early Monday morning. The rest of Monday was great, she had settled down, and sounded so much better. However, a repeat x-ray that afternoon, showed that the pneumonia started developing on the left side. Strange to me, since clinically, she was improving. So yesterday, I thought she will be outta here by Wednesday. Today is a yucky day though. She is officially on the rollercoaster ride. Down/up/down.. so tomorrow, should be up, right? Retractions have set back in, she sounds coarser than yesterday and today's x-ray does not show an improvement. She is on 2 antibiotics, extra fluids, slow drip feedings, and respiratory therapies ( steriod, hypertonic saline, vest, manual percussions, albuterol and suctioning. We are going to attempt the cpap again tonight. They tried last night but Kira Jean was NOT having it. Overall, she is not too bad, she's been much sicker than this. She just needs to hurry up and heal by Thursday because Momma needs some vino, candied yams and family!

Monday, November 21, 2011

7 Months..

...is how long it has been since Kira was last in the hospital for her respiratory illnesses. She was admitted yesterday, her cold turned into pneumonia on her right side. She has had a cold for about 10 days, even had 2 xrays to make sure it was staying out of her chest. As of Wednesday, her lungs were clear. On Thursday, I think it was, I started getting a couple green plugs. But since the x ray the day before said clear lungs, and just "common cold". I wasn't *too* concerned. There was a dramatic difference in her illness/behavior/02 needs as of yesterday. Until yesterday, while she had gunkies for me to suction and she required 02, she was calm, relaxed and comfy. Now she is a working machine, retractions, seizures back to back, very agitated, high heart rate and respiratory rate. The dramatic difference that took place in 1 day has me a bit concerned. But I know my girl, and she is one tough cookie.. so with the right meds and therapies, she should turn the good corner just as fast as she turned the bad corner. At home, she had been on 3 liters of 02 via nasal cannulas, but yesterday and this morning, she is on 6-10 liters via the mask. 7 months is such a good run for Kira Jean though.. i'm proud of her. I'm also very grateful to her new Nurse Jessica, for which I am certain has played equally as large a part in keeping her home this long. ( I feel like I am winning an Oscar) As she is struggling right now, and has not relaxed at all since yesterday, she could sure use some Prayers for comfort to overwhelm her body, so healing can take place. Thank you. <3

Monday, September 19, 2011

? x1

That means, this is my first follow up regarding the post titled, "?". It's been 2 days since I wrote that, and things really aren't much clearer over here, except for this..she *is* sick. She got a little worse, pretty much needing 02 consistently now, but she can get by on 1 liter for awhile, but never needing more than 2. She was off the 02 for a short time today, however... long enough to take a bath and kind of watch her to see what she does. If she is able to be on room air, it's momentarily, and she only sats at 93-94... then she will drop back to the mid-high 80's. Jessica, ( her nurse ) has been beautifully aggressive with her. She did the Theravest 3 times in an 8 hour period. The vest goes on like a life jacket, inflates like a blood pressure cuff, and vibrates and shakes so the lungs get jostled and helps in clearing the gunk from the sacs. I have mentioned it before, but it really is such a great medical tool, really makes a difference! She is not ready to go to the hospital yet, and hopefully, will not need to. I THINK we may be able to escape a trip with this illness. Her chest sounds clear pretty good with a hearty cough and deep suctioning. She is a comfortable girl, not agitated at all, nor have her seizures increased due to this illness. So all in all.. things are pretty mild over here. :)

Saturday, September 17, 2011

?

So I have no idea what is going on with Sissy. For the past 2 weeks, she has been dipping her 02 sats, and needing suctioning here and there. Her congestion sounds will clear when she coughs and I suction. It's very strange. Normally, when she is ill, it's cut and dry. She will get sick, drop her 02 sats, need supplemental 02 consistently until either the cold is over or she progresses to pneumonia. Before last night however, she could go 22 hours on room air in the high 90's, but need 02 for 2 hours because she's in the high 80's, then go back to maintaining a great number on room air. Ugh. Was that confusing? Sorry, if so. Anyhoo, pretty much yesterday, she was on more oxygen than room air. Last night, when she was on her left side, she was in the high 80's, but if I turn her to her right, she came back up to mid 90's. Something is a brewing, but I wish it would make itself more clear, whatever it is. Right now, it has me beyond confused. Right now, she is on her left side because she slept on her right, on 2 liters of 02, and her sats are 94-95.  I just realized to some people this may sound like I am speaking a foreign language. When I say her "sats" it's her oxygen saturation level. Your oxygen saturation level should be 100 if healthy. Even the healthiest of people don't always sat at a perfect 100 though, but really 98 or above. Kira, when healthy, always sats at 100. Her satting in the 80's clearly says there's a plug or something in there, that is not allowing free air flow, and allowing her body to oxygenate well. And I am sure most know this, but what the hay.... 02 means oxygen. I have an oxygen concentrator here, and it goes up to 4 liters. I use the nasal cannulas with it. She hardly ever needs me to use it though, like I said, unless she's sick, she's a pretty stable little girl! Okay, done rambling... I am not even going to proof read this, I know it's a mess of number's and jumble... I didn't sleep well, and have not had a full cup of joe yet... ;)

Wednesday, September 14, 2011

Respite Follow Up

So we are a week in with Kira's nurse Jessica. It is working out beautifully. Jessica is a very loving woman, exactly what I wished for, for Sister! She paints her nails, reads to her, sings to her, cuddles with her. Kira i'm sure, is in hog Heaven with this extra attention! Jessica has 4 kids herself, so she gets the chaos of a home with young ones. She doesn't mind at all that Aaron is at her heel often. He loves his new friend Jessica, lol. She is great with him too, adds him in to storytime and plays with him. I am feeling Blessed. Something that was brought up a couple of days ago, was my schooling. Now with her here full time, I would be able to go back to school. I filled out my online application for returning students last night. The next round of classes don't start until Jan. 14th, but I think I will be a student at that time! All great stuff ahead!

Monday, September 5, 2011

Tomorrow is the big day!

Kira's respite nurse starts tomorrow. All I know about her thus far is- her name is Jessica. She will be here at 8 a.m. I actually have an appointment for Sissy tomorrow at 11 a.m. for her monthly port flush. I will take Jessica with me. The house is pretty much ready for her, but there are still some odd and end things I need to do in Kira's room to be 100% ready. As it is, I have all of her tubing, ointments, hair clips, lip glosses, masks, etc. joined in the same tubs. So I need to separate and organize for the nurse to have easy access to each individual item. I am okay with a disorganized organized box, but that's just me. ;) I am honestly a bit nervous, and there's this small part of me that's still asking "Why am I doing this?" I already know the answer to that though. I am doing this for Kira, and ignoring any Mother pride that is trying to get in the way of it. I will definitely update tomorrow evening, about how the first day went. :)

Monday, August 22, 2011

Not completely stable

Well, here it is, 3:21 a.m. Kira woke me up, by making strange sounds. I went to check on her, and she had a bloody  nose in her left nostril, which is where she usually gets them, when on 02 too long, or with aggressive suctioning. When I took the 02 prongs out of her nose to wipe her, her oxygen saturation dropped to 74, and she went dusky (loss of color). I am not sure what is going on with her. Why is she on 02 you ask? Here is what has been going on for the past few days....

When Sissy needs to nunu ( go #2 for you appropriate folk), she gets worked up. She can sound congested and crunchy for a few days while her intestines are doing their business in there. Once she fills her diaper, her lung/throat congestion sounds, clear up. So I figure for the past few days, that is what has been happening here. Although, I never really need to put her on 02 during her nunu irritability (just coined that right now), she has been dipping a wee bit. Not much at all, when she dips, she only has been dipping to 88, then coming back to the mid 90's. I have been putting the 02 on her for security overnight. When I went to sleep last night, around 11 p.m., she was hanging at 96. I only had her on 1 liter, which brought her back to 99-100. So here we are now, and there is clearly more going on than what I thought. I deep suctioned to induce a cough, but it was nonproductive. She sounds pretty good. Which scares me, because sometimes, when she sounds good on the outside, but her sats are low, it means it is consolidated, just IN there, know what I mean. So I suspect we will be at Kaiser today. I will keep you posted.

Thursday, August 18, 2011

Falling into place

Things are seriously turning around for the better super quickly all of a sudden. It's finally all coming together. I should be able to pick up Kira's handicap parking placard soon, and I just got home from the van conversion shop that is going to hook a wheelchair lift to the back of my truck! This is all so exciting! This platform raises to my level for me to hook the ties on, lowers and drops flat to wheel the chair off/on, and fully swings out of the way for total back of the vehicle access.

Handicap Placard... check
Wheelchair lift.....check
Respite nurse.....check
Employment for Daddy...check
Hospital bed... half check

Thank you Jesus.

Wednesday, August 17, 2011

Updates

Hi guys. A few updates here, on respite, the bed and her Rapunzel hair.

I just received a call, letting me know they found a respite Nurse for Sis. The charge Nurse will come to my home next Wednesday to do the paperwork, talk more about what this all entails, and do a home inspection. K, that last part scares me.. do you even know how much house cleaning I have to do, for someone to do a walk through of this place?! Egads! Then, Kira's Nurse will start approximately 2 weeks after that. I would love some Prayers that it's a good match. I understand that the match is more for her to tend to Kira's high needs, but obviously, I Pray for a good personality match for her and myself. Her hours will be 8 a.m. to 4 p.m. M-F. I have no clue how I am suppose to entertain her for all of those hours each day. Kira will not need all of those hours to be hands on...so there will be tons of chit chat between her and I. I am sure all of this will be a beautiful situation, as I absolutely adore almost every one of Kira's hospital folks. I will keep you posted...

I spoke to Kira's Dr. about the bed situation, and she was putting in another prescription for a new bed. I have yet to hear anything back though. I need to follow up, because by now, a new bed should have been delivered, I should have received an email, or received a denial letter by mail. Good thing Kira sleeps with me often anyway.

After years of debating on cutting her hair, I DID IT. I would go back and forth so much, and always falling back to the fact that it's gorgeous and I just can't and won't cut it. Now that I did, I have no doubt what so ever, that I made the right choice, for KIRA. I kept it long for ME. She did not like her hair long. She has a sensitive scalp like her Momma, and she would posture and spit when I combed the rats nests out. It was always getting pulled, laid on, or caught on something when down. So I ended up mostly keeping it in an updo. Everyone told me how beautiful it was, that I shouldn't cut it, and even Jim has said many times that she is like Samson, and her hair is her strength. I put way too much symbolic value on her hair. She is my only girl. I have all of these boyish boys, and I just want to be able to do the "girly" thing to the fullest. It was such a ridiculously emotional thing for me to do. I am almost embarrassed that all of this hair business with Sissy is such a big deal to me. Anyway.. it's done, she looks absolutely adorable, and I know that she feels a million times better. THAT is what matters. It's quality of life, not length of hair for this girl now! ;)

Umm, what else to update with? Have I been on here since her Birthday? I don't think I have. It was pretty uneventful for her unfortunately. We went to my Father in Laws, and had a nice time with a few family members. For a large part of the day, it was too hot for her to be out, so she stayed inside, on the couch while we all swam and bbq'd. Poor Girl. She sat in Daddy's lap for her fireworks. YES, they are HER's now! lol Next year, Kira is going to have a large birthday bash at our house, on a different day other than the 4th.  You are all invited!

On a wonderful note, Jim finally got a job. Hard times are about to be lifted. Whew. I have learned many valuable lessons through out all of this though. I have learned how to stretch a dollar, found humility, and changed my judgmental outlook on people who are seen as low class. I will go from here, to hopefully being a frugal, financially responsible, and more compassionate for people, woman.

Before.. between her bottom and her knees.

After. A short, layered, A-line bob.

19 inch braid. (Still smells like coconut) ;)

Saturday, July 23, 2011

New Bed

Today, Kira's new bed will be delivered. I am very excited about this! I have scoliosis, and get back aches often. It will be such a relief to be able to raise her bed high enough that means no more bending over! The head of the bed inclines, which is awesome for her lungs, and her dogs get a lift as well! Since this is Mine and Kira's blog, and I like to keep it on the honest side, I am going to admit something. As stoked as I am, I am a bit bummed that she is not getting the Sleep Safe Bed. I feel like I am 12 when I say that " Everyone else has the Sleep Safe Bed!" But they really do. Sleep Safe is a pediatric hospital bed for home use. This is the bed that she was going to get, they even had me look through the brochure and pick out the color of wood. It is an awesome bed! But the economy the way it is, and funding being cut everywhere, I do understand wanting us to have the cheaper bed. I realize this is sounding so ungrateful and greedy, I get that. I was just so wanting that bed, and I have yet to find another parent who has a regular hospital bed as their child's permanent bed, at home. I do feel incredibly Blessed to even be able to get the equiptment that we have for her, SO Blessed. It's no money out of my pocket, so I will shut up now. I will post pics of Baby Girl in her new bed this evening!

**** Update****
Apria just left, and I am in tears. This bed is horrible! It has to be the oldest style on the market. It is dented, scaped up and metal. It has a crank handle to raise the bed, and a couple metal bars by the head as the "side rail". I cannot believe they thought this bed was even close to being acceptable for a disabled child. It has zero protection for her, not user friendly and looks just hideous! Sorry folks, no fun, exciting pictures coming! I will obviously take care of this.

Monday, July 18, 2011

Respite Nursing

Ever since Sis was an infant, I have been told of my option to have a respite Nurse come into my home to help take care of her. I have always declined, because, " I can take care of her myself, she is MY baby, and I don't need any help." While this is still true, I have also been able to drop a bit of that ridiculous pride, and realize that now would be a great time to start accepting some help. Jim is about to start working out of town, making me somewhat of a single Momma to 5 children. She is getting older, which means heavier, which makes her body much more awkward and difficult to move around and take out. I see many pluses to having a Nurse in my home, helping with Kira. She deserves the extra hands to do range of motion, read to her, get her out of bed and rolling around in her chair, etc. It will help me be able to take the boys to and from school without having to load her up in the truck daily. I know it will be a difficult adjustment to having a stranger in my home, many hours a day, taking care of my child. I will feel very.... what's the word I'm going for...I don't know, let's just say uncomfortable. But I hope that it is a speedy adjustment and the Nurse and my family have a great rapport. I have to admit to still feeling guilty that I "have" to go ahead and accept this help now. I feel like I should be able to do everything she needs, medically, comfort wise, and stimulatory wise. Truth be told, she deserves so much more than what I provide her. I ask that none of you rebut this, because I have laxed way too much over the years with her care.  I do not do everything that I should with her, I cannot even tell you the last time I gave her a full body massage or did a session of range of motion. It's sadly too easy to let her remain still and quiet in one room of the house, only going in to feed her, change her, change her position, or turn her music on. It's not fair to her, and it's neglectful. So I am doing this for her, she deserves nothing but the best care!

Tuesday, June 21, 2011

Family Reunion Part Deux

Uncle Denny, Mommy, me

The weather ended up being pretty nice that day. Kira was a little flushed, but she did great. A few family members got to meet her, and she got an ear full of fun and laughter. I think she had a great time!

Wednesday, June 15, 2011

Family Reunion

We have a family reunion this coming Saturday. My Daddy's side of the family is quite large. Granny had 12 kids, and they all had kids, and they all had kids, etc. It's going to be a great day. I am very much looking forward to my kids meeting and playing with new cousins. The one issue at hand, is Miss Kira Jean. With her autonomic dysfunction, she cannot tolerate extreme temps.. her body goes haywire. If it's too hot, she runs the risk of storming. Jim says people will understand if she cannot be there, ( it is outside at a park). But that is not okay to me. Family want to meet Kira, and Kira wants to meet family. Period. Usually, if we attend a summertime gathering, it is at someones house, and Sis gets to be in the cool house. I am thinking, I will bring a spray bottle to wet her down IF she gets too hot. The forecast says it should be 86 that day. If all else fails, and she starts to "act up" I can leave with her. But I feel this is important enough that she needs to at least make an appearance. ? I would love if any of my readers have a special child who is sensitive to heat, what would/do you do in situations like this?

Friday, June 3, 2011

Blogger Award

This is my cute little award that I received from the Mrs. Beautiful Amberlie at http://www.parentingpains.blogspot.com/ . Okay, yes, she is my Sister, but still. She loves my blog! I am also her biggest blog fan! With this award, I am to pass it on to my favorite top 15 Bloggers, and post to you all 7 things about me. This is scary.. do I let you in on 7 things that can make you not want to associate with me any longer, or 7 safe things, that will keep me on your Facebook Buddy list? Let's see what pops in my head...

1) I can out-eat you. Yes, even YOU.
2) I have had 5 body piercings and recently got my 1st tattoo, a large, full side one.
3) I love to smell my kids' breath. The stinker the better. Morning breath is my personal jackpot.
4) I am fluent in gibberish.
5) I sucked my fingers until I was 12.
6) I want to be a Suzy Homemaker so bad, but in reality, I am a horrible cook and housekeeper.
7) I love my children more than life itself. I would pop out my own eyeball just to feed them. ( Now THAT my friends, is love.)

I would now like to pass this award to...

http://www.parentingpains.blogspot.com/
http://batsinthebelfry-katie.blogspot.com
http://renaissanceroad.blogspot.com
http://sweetieg.blogspot.com
http://themomsweightlossjourney.blogspot.com/
http://ramblingsofachristianmom.blogspot.com/
http://shesoncraft.blogspot.com/
http://supermombyday.com/

I will post the additional receivers later. I just want these top winners to know they are doing a fantastic job at blogging. They have great reads! Please take your award, and post it on your blog! :)






Tuesday, May 31, 2011

Kira said an A word!

Kira is not as comfy as she could be tonight, so she is making little moans, gurgles and breathing heavily. Aaron came running out to me in full on "tattle" mode, yelling, "Momma, Sissy said an A word!!" Aaron calls any curse words, A words. I asked him what she said. He answered, " She said a-a-a-a- word that I shouldn't say, only a word Daddy should!"

Well, considering the fact that he is 4, and will not repeat a curse word, and Kira cannot speak at all.... I guess I will never know what bad words she spews at her baby brother when it's just the two of them. 

Friday, May 20, 2011

Randomocity

This will be an area for me to post short little random things that I would like to share.

5/20... Last night there was a lady bug on Kira's pillow, right next to her face. I thought that was pretty cool! I always feel a sense of joy when I see them, not sure why. Is it said that if a lady bug lands on you, it's good luck? How does that go? Either way, what about if they want to share your pillow and go sweet night night with you?

Saturday, May 14, 2011

Welcome to Holland

When Kira was an infant, I came across the most amazing poem. I sat in front of my computer screen reading it, with literally a soaked face. I had tears pouring out of both eyes, ( would be funny if it were only one eye, huh!) I just could not believe what I was reading. This Momma that wrote it, has a special needs child, and she wanted to convey to the "outside world" what it feels like when you get the news that your child is not completely healthy. This poem took my emotions, my feelings, my words, my thoughts, my rage, and placed it into this poem that made me step back and say, "Yes, Holland is amazing. Different, but amazing." I share this poem with the staff at the hospital, and I encourage you to please share it with a family that has a special needs child. It is such a deeply penetrating poem, and can help many people. She just hits the nail on the head!

Friday, May 13, 2011

Questions?

I have come across many people who tell me they have been wanting to ask me certain questions about Sis, but didn't know how to approach it. I want it to be known, that I am an open book with her. I try to cover most aspects of her disability, but I'm sure there are still things that someone can be curious or concerned about. I know the word 'disability' can be a 4-letter word to some people. I often hear that that word should be banned, because special people are differently abled, and they do have the ability to learn and progress. I completely agree with that, and most special needs people are, in fact, differently abled. But let's be honest here, Kira is asleep. There's not much one is able to do when the brain nor body are in an awake state. I would love for her to be categorized as "differently abled" but alas, she's just a snore bucket. * Said in the most adoring, respectful, and loving way imaginable. ;)*

So this post is an open forum opportunity. If there has ever been something you have wondered about, or something that popped into your head as you are reading this now, ask away.

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!