Unwanted visitors

We have had some unusual visitors to our backyard this last couple of weeks. Cale woke up a few weeks ago to find this little guy 15 feet from our back door. Then Emma woke me up today to tell me that there were bears in our backyard. I went to the door and saw 3 of these things! I immediately woke up Cale and said what the heck is in my yard. They ran away before he saw them but I told him they looked like black warthogs. He said they are called Havalinas and are wild. I looked them up and they are actually distant relatives of the Hippo, not pigs!

Update on me

Many people, family, friends, doctors, nurses, fellow employees, all ask me how I'm doing. They get the same answer that I give when someone asks in passing how Kinzie is doing today - fine. I'm not trying to blow people off; I just truly don't know how else to answer. I'm sure they don't want to hear what I'm really feeling and so for lack of a better word, I say "fine." My good friend Jodi, who has an 8 year old with Aicardia (sp?) syndrome has had 8 years to figure out this answer and posted these two sources. Chronic sorrow accurately describes my feelings these days. Some days I rejoice in seeing other babies growing and developing and other days I simply turn off the computer and hide inside the house trying not to cry because my baby doesn't do that. "Welcome to Holland" is a great short story (very short, please read now) that also shares how I feel. Please read it before continuing to read this post so that you will better understand the feelings that follow below.

Everyday is a constant struggle to just suck it up, realize that life will never be what I thought it would be and to make the best of it vs. Satan's effort to sink in despair and saddness. I truly believe that certain spirits were so special in the life before this that Heavenly Father did not want to risk them not returning and/or that other spirits were so righteous that they need not come to this life and be tested as the rest of this. Regardless, I also know that I will get to see my little Kinzie perfectly healed in the next life and that she will be exalted on high! Having said that it doesn't take away the mortal feelings of hurt and saddness that she is missing out on the opportunities of this life that Emma for example has. It also doesn't take away the hurt of missing milestones that other parents get to enjoy with their baby and child. I love my little girl with all my heart and am so glad that she survived and I know that she will continue to teach us a whole new aspect of love but I know it will take time since I am human to continuously see the better side of our situation rather than the glimpses I get on a good day when I'm feeling up to the task. So in an effort to answer the question, "How am I holding up" I hope this helps to understand just what "fine" means to me these days. Thank you everyone for helping us through this.

Oh my Emma. You crack me up! I came into find Cale feeding Kinzie and Emma doing this over and over. Brett and Brittany I thought you'd appreciate the music. Too bad Emma wasn't around yet to give you these moves for your wedding day!

Sodium Up Finally!

After months of plummeting sodium levels, her Monday lab was finally up and up a lot!!! She had previously been 121. Our critical threshold is 120 and lower, especially 110 and lower. So I've been watching and waiting to hear that we were beneath 120 but finally the salt supplements are working! She is 128!!! Normal is 135. So hopefully, this will continue to there and then we can work on finding the balance to keep her stable but not continually increasing! Who would imagine that an American needs salt supplements to their diet!

Eye Doctor Update

Ok, before giving the diagnosis from the eye doctor let me first say how nervous I was to see yet another new specialist. You never know if are going to get the doom and gloom pessimist or the optimist or something in between. I LOVE her eye doctor, Dr. Cassidy. He was amazing. His office staff makes you feel like you are at a resort with their manners and service. His kindness for Kinzie was so genuine. The whole time he was telling me the diagnosis I kept thinking "ok, remember that term" and he kept telling me "Don't worry, we'll write it down." And literally, his assistant was standing right there writing it all down for me! Then they mail me the formal diagnosis with a definitions page as well as send it to her PCP and appropriate foundations. I left so informed and organized!

Ok, for the diagnosis. Optic Atrophy, Cortical Visual Impairment, Nystagmus, and Hyperopia. Wow! What does all that mean. Basically there is some nerve damage to each eye from the HIE hit in utero. Both eyes are far sighted. The damage is on a scale of 0 to 4, 0 meaning no damage and 4 meaning blind. Her right is a 1 and her left eye is a 2+. However, the damage may not all surface until up to 18 months old so it's a weight and pray game that it's not worse that it appears.

Treatment: stimulate, stimulate, stimulate. Her eye rolling is basically her way of saying overload. The nerve is very long and the info basically gets lost along the way. With practice her brain may be able to reroute or concentrate enough to get the signal all the way to her eye, brain, and back to her eye. We'll return in 2 months to look for improvement or worsening.

I know this is pretty short but it was the best I could get on tape. Kinzie started smiling today and then she started laughing and once she started she couldn't stop. She was sleeping the whole time or at least her eyes were closed and she appeared to be sleeping. She must have been dreaming about what a good mommy she has! lol

Update

Kinzie and I came down to the valley last night for 5 appointments today and 1 tomorrow.

1st: Occupational Therapist for splinting of her hands. Her hands are very wind swept outward and need to be straightened at the wrists and the fingers. Also her thumbs tuck in her fists rather than outside of her fists so the splinting will stretch those muscles and help them to extend. Meg was the OT who saw her PCH and generously fit us into her schedule. It took hours to get it right and Meg just kept working at it. Thank you Meg!

2nd: Neurological Psychologist for evaluation. Kinzie was sleepy but cooperative. The developmental diagnosis is still out until I get some of my forms back to her.

3rd: Modified Barium Swallow test. She was not very cooperative for this but did show that she was still safe to nipple "thick" consistencies and so we will begin trying to get her to take a bottle again.

4th: GI. We have been waiting for this doctor for months now and I finally left GI not in tears. Unfortuantely Kinzie has not gained weight this last month and is still 11 pounds 9 oz. This puts her at the 5th percentile for weight and also is at 5th for height. She is at 50 percentile for head circumference though so the brains are growing! lol

We made quite a few changes her and pray they will help her to gain some weight and grow. We will increase NG feeds from 22 calories 9 times a day to 26.4 calories 10 times a day. We have to be careful due to her SIADH and not add too much extra fluid so just extra calores. We will continue to add 1/2 tsp salt for the day to help sodium loss from SIADH. We will also start her on a Rx for Lachulose (sp?) to combat her constant constipation. This seems to restrict the volumes that she can handle and so if we can keep her regular maybe we can increase the volume some. This will also alleviate the need for adding Karo to each bottle. In addition we will try thickening bottle feeds with gel rather than Rice again to minimize the constipation.

5th: We visited Pulminology to assess the need for the Apnea monitor and the O2 battle between docs. (My doc up North says not necessary, PCH says it is). PCH won. We will be back on O2 for 1 more month and will thus continue the Apnea monitor for one more month.

Tomorrow we see the Eye doctor. It and the swallow test were my main goals for coming. we had hoped to see Nephrology for SIADH too but couldn't get in so maybe next month. I'll update you on the eye doctor tomorrow.

Thanks to all our great supports. I was able to see all my Primary nurses and doctors this visit and it was a great reunion. Also the best news of all....Kinzie started to smile and laugh today and all day! I have pics and video on my phone and will work on getting that on here! I have been waiting for this day and hearing for so long that it may not come. Well....it did. I think Heavenly Father knew that I needed something to go on to keep my faith up. It worked. I know my little Kinzie is a fighter and I know that she can learn and grow. We will just keep working at it!

Emma's First Camping Trip

Emma loved cmamping! I have never seen a dirtier girl! She loved not having to be clean and able to make a mess.

This is a 4 man tent which usually means a 3 man tent but heck we crammed two adults and one toddler on the air mattress and Kinzie in the corner in her car seat. We were all very warm and pretty comfortable. Emma was especially comfy and warm and slept soundly...until the sun came up at 5:30 am. I introduced Emma to the camping hair style... or lack of!

We had a great spot right on the creek, surrounded by trees, but too close and downwind of the potties! I'm the only one with a sensitive nose apparently.

Even Kinzie loved camping! The early morning got a little cold but she was well bundled in a little cocoon and was probably the warmest...or second to Emma maybe.

We of course roasted our Smores which Emma liked for a few minutes...but then decided it was much easier and faster just to eat the marshmallows and cookies raw and separately!

Uncle Chris and Aunt Lisa came to visit this weekend. We sadly forgot to get their pictures with the girls. However, the girls had fun all the same. Uncle Chris generously bought Kinzie her much needed Bumbo seat to help strengthen her muscles and encourage her development. You can see that she likes it, fits well, and is very much alert. Emma was invited to swim at the hotel which she called Chris' pool. She wore this all day in excitement for the blessed event! She needed a new suit so we splurged a little and got her a Hippo floatie and arm floaties.

We forgot to get pictures at the pool but surprisingly it took an hour of her getting in and out very timidly before she warmed up and wanted in all the time! What did it...the arrival of kidz as she calls them, of course.

Thanks for a fun weekend Chris and Lisa!

Who would know that vacuuming could entertain her for so long? lol She has always loved to watch me vacuum from the couch or the bed... She has always been a little afraid of it. But this day I said we needed to clean up to vacuum and she hopped to it and then wanted to vacuum with the wand. She stayed with it till the job was done.

We finally had a nice hot day with out any wind...until I set up the pool. Now I have to explain a few things....1- I forgot to charge the pump but it turned out better to be so deflated cuz they could get in and out themselves. 2-Summer came upon us fast and so yes, i know that Emma desparately needs a bigger suit but at least Kinzie has room to grow in hers.

All in all, Emma and her friend Shandelle loved the pool. They finished the day with an otterpop and graham cracker! These two are so cute together. They ran into each other at the grocery store last week after having not seen each other for many months. They immediately hugged over and over! They were equally thrilled to see each other again. Funny what or who they remember!

Failed Oximetry Study

Poor little Kinzie had her oximetry study done last week where they monitor her for 6-8 hours while sleeping to see if her oxygen stays above 90% for 90% of the time. Her levels fell below 90% for 40% of the time. Thus, we are back on oxygen. I pray for the saying "two steps forward, one step back" to apply to us rather than "one step forward, two steps back." :-(

I want to take so many pictures and do but often also don't take them because I can't see her face behind all the tape and things stuck to it. Brittany, your job is to do your photo thing and erase the tape so I can see my beautiful little girl!

My Birthday!

I have the best husband in the world because he listens to what I say I need even if I didn't know I said it. Obviously, we have both been exhausted learning how to take care of our special little girl and keep up with our special little 2 year old, but we both know that it's been especially hard on mom since I do it for 13 hours every day while he's at work. He is wonderful at relieving me when he gets home but 13 hours is a long time. So anyway, my usual answer to "how are you" is "tired." Thus, for my birthday he rented me a hotel room...just for me. I know it sounds wierd to say that my present was a night away from him and my kids but it was wonderful and so needed. I went to bed at 10:17pm and woke up at 6:24am. I then went back to bed till 8am, went and got my included hot breakfast, and went back to bed till 10:30am. I had forgotten what it felt like to sleep in so late, to sleep with the sun shining outside, to sleep all spread out in a giant bed, and to not wake up every few minutes with every sound Kinzie makes.

THANK YOU, THANK YOU, THANK YOU CALE! I LOVE YOU!!

P.S. The poor man was exhausted when I came home at 11!

Poor Kinzie

Here's the update:

1. Got out of hospital on Thursday provided I give the remaining injections of antibiotics.
2. Went to scheduled doctor visits in PHX on Friday.

• Urology: stop cathing since she is voiding on her own well.
• GI: no change, don't start bottle feeding until next swallow test (July, maybe June)
• Pulminology: continue on apnea monitor; have Oximetry study done one night to determine o2 level while sleeping.

3. Finished antibiotic - no big change in temperature - still high.

4. Vomiting increasing.

5. Attended pediatrician visit today - temperature due to viral infection on top of bacterial. Antibiotic probably cleared up bacterial. Waiting out viral. No other changes. Weight: 11 lb. 9 oz. and 22.5" long.

Kinzie's Blessing

Today was a cold, snowy, and windy day. But it was beautiful because we were finally able to give Kinzie her baby blessing. Ironically, we had been waiting to do it when she was off oxygen. Of course after last night, she was back on oxygen just in time for the blessing. :-) Cale did a beautiful job. Some of his family was able to come which very nice. Emma actually did very well through it and was quiet, busy but quiet.

Emma the Painter!

Sometimes the mess is totally worth the silence! Emma is sooo busy. She loves to play and play anything but she does not play alone very well. She definitely needs siblings....aka, the one she has needs to grow older and play with her! So when mom or dad have to get things done and can't always play, tantrums develop. After too many of those and you're willing to give them the world if they asked for it. Instead, I gave her the paint, stripped her to her diaper and put her table in the middle of the kitchen floor. She was so content to paint and paint herself. I was content to observe and enjoy the silence as she concentrated. :-)

Back to the ER

Many of you already know of our little trip to the hospital yesterday but in case you don't here is the update.

Kinzie finally had one of her "episodes" yesterday that she had in PCH frequently. PCH was always stumped as to what they were and why she did them. All we know is that she apparently is growing out of them by learning how to handle herself better. They are brought on by her getting mad whether because of nose suctioning, being poked, temperature taken, reflux, gagging, bottle feeding, etc. Once she gets that mad she holds her breath, immediately turns purple/black (skipping blue all together), then usually poops and/or throws up and then has "neurological irritability" for up to an hour which looks like seizure stiffening with facial droops and head turns but is not.

So yesterday I was suctioning her nose (from her cold) and she got really upset. Wierd because I do that all the time. She doesn't like it ever but usually protests very little. The differences in yesterday's fits were that she did 5 in a row of going purple and coming back. Luckily we still had O2 in the house and could throw that on her. She also did not do the siezure like activity at all! That is a huge improvement. However, because of the repeated breath holds we called 911 in the middle of them. We had her stable by the time the paramedics arrived but not when the officer arrived (poor guy, the EMTs said we scared him pretty bad - he didn't stick around). They did find though while mointoring her that she could not hold her O2 without the oxygen on. So they and our doctor advised a trip to the ER to see why. We refused transport and drove her ourself (20 minutes) due to her being stable and on oxygen.

We were at the ER for 5 hours mostly waiting. They did a CBC, RSV test, took a urine sample, and some other blood work. They also took a chest x-ray. They found that the lungs do look bronchilitic, meaning they do have an infection. The RSV test came back negative but the doctor said he still thinks she has RSV. The test is only 80% accurate and can miss 20 kids in a 100. The influenza also came back negative but is only 50% accurate. The urine came back "suspicious." 3 of 5 markers were present and thus they suspect a UTI and put her on new antibiotic. The CBC (complete blood count) showed white blood cells to be slightly increased but still normal. The chest x-ray also showed that the streakyness from two weeks ago was gone.

Bottom line - they were 50/50 on admitting her and left it up to us. They said they would basically just be watching her and treating for RSV which is to put them on oxygen (we have that already) and frequently suction their nose secretions (already do that too). So we decided to bring her home rather than create trama again by putting her in a hosptial and making her suscpetible to hospital bugs.

She does have to be back on oxygen as she drops to the 70s immediatley without it. The RSV could be responsible for this but it could also be related to her way of handling stress which is to shut down, in this case possibly shutting down having to deal with the infection in her lungs and breathing. I suspect in a couple weeks she will bounce back. That's just Kinz!

We are continuing with her blessing today but will leave right after to minimize her exposure. We have delayed it for too long and feel she needs that done.

She is a fighter and handling this all very well. She is exhausted from the episode but that is normal for her too. Thanks again for all your prayers. We feel them and appreciate them.