Saturday, August 29, 2009

Meet the newest additon to our playgroup


One of my best friends here has a daughter who is Abby's age and started kindergarten this week. What did her mama do to deal with the grief of sending a child off to the real world? She brought another little daughter into the world on the same exact day, of course. It has definitely been an eventful week for this family on so many levels!

When my friend told me she was pregnant so many moons ago, I was so excited about the possibility of doing her newborn shoot shortly after birth when they are the curliest and sleepiest little bundles. And let me say that this was by far the easiest newborn session I have ever had. It was definitely a blast!! Meet Miss O...a sweet 6 day old who will just steal your heart...

Friday, August 28, 2009

Some changes on the horizon


My little Nafey boy was such a trooper during his tests today. The pulmonary team administered emla cream on his wrists and then his pulmonologist later injected some lidocaine to numb the rest of the wrist. A member from the NICU team came to do the arterial sticks, and when she couldn't get it on the first try, they immediately called a member from Shands Cair...the transport team...the elite of the elite when it comes to doing difficult procedures. It only took her a quick minute to gather the sample from his artery, and she was called back to do the second one as well. I have to say that I am once again thankful and happy with the care we have received at Shands.
They did the first stick to get a baseline for him and then put him on oxygen for 30 minutes before they did the second blood gas. In usual Nafey fashion, his ABGs had quite a few abnormal levels (the poor kid has never had a normal blood gas), but the one we were concerned about the most was the lactic acid level. At his baseline reading, his lactic acid was elevated. After he had been on oxygen for a while, his lactic acid had dropped quite a bit, putting it in the normal range.
As tough as having oxygen will be, the change in his blood gas results was extremely encouraging and gave us hope for a potential treatment that could help him along this journey. With the lactic acid levels decreasing quite a bit with this treatment, this should give us enough evidence to prove to our insurance company that Nathan does indeed need oxygen as a supplement. The change it will be for him and our family is great, but this can provide so much good growth and help for him in so many ways.
Furthermore, Nathan's pulmonologist was very excited about these results and mentioned that it might make a good publication since these results (LA levels pre- and post-O2) have not be tested or seen in any other mitochondrial patients, to our knowledge. At least, he hasn't been able to find anything on it. He was merely doing this test on a very good theory he had, and it appears to be true in Nathan's case. I am once again impressed with our Pulmonologist and appreciate his caring nature and interest in Nathan...so I was extremely sad when he told me today that he will probably be leaving the program here in a little less than a year. When you see and converse with the medical team on a regular basis, quite a few of them become like friends and family. It's sad when those ties come to a close over time.
The current plan, barring any insurance issues, is to put Nateman on O2 for a month solid and see if he can gain some weight. If he gains weight, we know our theory behind trying this is true for Nathan...he just requires the extra oxygen to help his body function at a normal level. If he continues to stall or lose weight, our theory is kind of thrown out the window. It will take a good 2-3 weeks before they get everything squared away with our insurance company and our home health agency. As much as it hurts us to have to put Nathan on oxygen, we are also excited about the benefits he might gain from this type of therapy. And believe me, it has taken quite a few long and emotionally exhausting months before I have been able to say that. It was just a month ago when we were saying "absolutely not" to the idea of putting oxygen on him...it is truly amazing how God can change your heart.

It may be a trying month around here after the tanks are delivered, but I sincerely believe that God has opened this door up for us and is directing us in the way we should go regarding this situation. Thank you so much for your prayers and messages today...they truly do mean a lot to us.

Thursday, August 27, 2009

A year and a half


My little man turned 18 months old on Monday. 18 months seems to be the middle of the bridge from babyhood to big boy land, and it is simply amazing to see all the changes at this age. I love it. Nathan's speech is finally coming along, and it is so much fun seeing him try to mimic syllables and sounds that we make. When his OT was here the other day, Nathan brought over his favorite Dr. Suess-ish book, looked at the cover and said "Go Dog, Go". The little dude doesn't say much, but he is definitely retaining every single morsel he is exposed to each day and throwing this knowledge out there whenever he feels the need. I love this age.
His 18 month appt yesterday was the easiest I think we have ever had! His pediatrician reminded me that we had one other fairly easy appt quite a few months ago where everything was smooth sailing for a little while before we hit some more bumps in the road. That is one of the hard things with this disease...you can be truckin' right along fine and then all of a sudden run into some rough spots for a while. Thankfully, Nathan is looking better right now than he has in quite a while. We are constantly changing our normal around here, and I think we are finally adjusted to everything right now. Let's just hope that it stays like this for a while.
That being said, we had a tough pulmonologist appt last week where it was brought up that the recent troubling things we have seen with Nathan's breathing is more than likely some disease progression in his core muscles, specifically the muscles that support his respiratory system. We are currently in the works to figure out if we need to start treating this now or if we should wait a bit longer until we see more progression. If we treat now, we are wondering if we can help slow down the progression of this respiratory muscle weakness...unfortunately, no one knows that answer to that, so we are in limbo with trying to figure out what to do and what insurance will allow us to do at this stage.To hopefully answer some of these questions, Nathan will be undergoing an extremely painful aterial blood gas tomorrow. It is a test that I have been denying throughout Nathan's life and opting instead for a venous blood gas to give us the information we have needed. However, as much as it hurts me for him to go through this, we have reached the point where an arterial blood gas is warranted. We have an incredible crew at our hospital who are extremely considerate to Nathan's needs and have some tricks up their sleeves to minimize the pain as much as possible for him. Please pray for the little guy tomorrow. He gets poked and prodded a lot, and we are all as used to that as we can be...but I have to admit that I am quite apprehensive about this test. It doesn't help that they are going to have to do 2 of them...one at his baseline and one after he has been on oxygen for 30 minutes. So please, remember Nathan tomorrow and pray for comfort for my little guy.To end on a positive note, Nathan is almost on the growth charts once again! He is up to 20 lbs. 12 oz and just has a few ounces to go before he reaches that 0%. HA! He definitely has his appetite back right now, and we hope that it stays for a while this time. We definitely feel more at ease with his weight gain right now, after suffering through weight loss all summer. Hopefully this will be the little extra help to keep the g-tube talk at bay for quite a bit longer. And I am really glad that Nathan's pediatrician said that she is pretty sure she can get our insurance to approve the Synagis vaccine to prevent him from getting RSV this year (really, really expensive monthly shot that he will get probably from November to April). This is a HUGE weight off my shoulders since Nathan is in the "serious risk" category if he gets RSV because of his neuromuscular problems, especially the resp. muscle weakness. Oh, and one more bit of fun news from this week...I am so excited to say that I am now the UMDF Ambassador for the Gainesville, FL area. There are 3 other relatively new ambassadors in Tampa, Orlando, and Sarasota, and together we all have some really neat ideas coming up for awareness and fundraising for mito and the UMDF. The 3rd full week in September is Mitochondrial Awareness week, so I hope to devote that week on this blog to facts and info about mito. In addition, I am trying to start a yearly "Photos for Mito" fundraiser to take place on a Saturday in November where I will offer mini photo sessions and a CD of 5-10 pictures for a donation that will go directly to the UMDF. This is all very very new in the planning stage, so I will update more as the plans continue. Such an exciting time for awareness in our state!!

Tuesday, August 25, 2009

The first day


Emma stood at the chain-linked fence yesterday afternoon and shouted Abby's name as loud as she could the moment her big sister came into view. Abby just tucked her head down and smiled...not an embarrassed smile, but a proud one that her name was being called by her best friend in the world. I wonder when that will change. As soon as Abby received the "okay" to come to us, Emma zig-zagged between the legs of the other parents and gave her sister a huge tippy-toed hug.After we were home, we sat on the couch and I tried so desperately to get every ounce of information out of the girl. What did you do? With whom? How was everyone? What did you say? What did they say? But much to my chagrin, these questions were answered with many "I don't knows" and "I can't remembers", which was enough to make me want to use one of my three wishes to turn myself into a fly for a day just to see the whole shebang in action for myself.
For the first half of the day, Emma would routinely mope up to me with an "I miss Abby" or "When are we going to pick her up?". But after a couple of hours of getting to do what Emma wanted to do, she quickly changed her tone to "I love it when Abby is a kchool." We played tea party, danced like princesses around the livingroom, and read the books she wanted to read. And honestly, I had as much fun as she did...Emma and I have never had much one-on-one time. I think we are both going to like the change in our day after a while.
All in all, it was a great day. Abby had a great time and was quite a bit bummed that due to the kindergarten staggered-starting, she doesn't get to go back until Thursday. That was the only time all day I was afraid she was about to cry...when I told her she couldn't go back to school for 2 more days. For us, it has been a bit of an emotional rollercoaster as we are sad that life seems to pass by at warp speed, nervous about what our children will encounter in this big wide world, happy that Abby is so excited about this next step in her life, and relieved that our Heavenly Father will watch over her at all times. This step definitely does enhance our prayer lives for our children, that's for sure.
**Emma's dresses in the two pictures above can be purchased over at Lillipops Designs.

Monday, August 24, 2009

Kindergarten


My dearest Abigail,

You had a hard time falling asleep last night because you were so excited about today, and you couldn't stop smiling all morning long as you prepared for this first exciting day. It warms my heart beyond measure to see you this excited, and I appreciated your attitude, as today would have been so much harder on your poor mama if you were apprehensive about starting school. Emma gave you a hug before we left, and you affectionately said "Goodbye, my Rosebud", which is Emma's "doggy" name in one of your many pretend games the two of you have played for the past couple of years. She has been asking me all morning when she is going to get have an "eat-over" with you at school, as I have promised that we would eat lunch with you someday soon. There are a few days in your life that are clearly etched into our memories. I remember your birth like it was yesterday...the room, the smells, holding you for the very first time and staring deeply into your eyes. I remember sitting in the living room floor as you took your first steps back and forth between your father and myself. When you first told me you loved me, unprompted, we were sitting at the kitchen table eating breakfast and I felt my heart swell larger than I thought it could. I remember every aspect of you coming to the hospital to meet your new baby sister...and later your baby brother. The look on your face as you looked down at the little being that would be such an integral part of your world and our family is something that I hope to never forget...it was the look of pure love.
One more memory that will be etched in my mind is that one of your first day of kindergarten. I felt your tight grip in my hand as we walked down the hall to your classroom. Each time I would have to pull my hand away and do something, you would instantly grab it again as soon as it hit my side. You put your lunchbox in the holder, your backpack in your cubby, and sat in the floor with a book while waiting for the rest of the class to get there. A couple of pictures and a quick kiss later, I walked out of the room with a little bit of my heart left behind.
I am excited about what this year holds for you. And I really can't wait until you get home and tell me all about your day. And even though you looked so big and grown up all of a sudden as your entered the doors of your elementary school, you will always forever be my baby girl. I love you, my darling Abby.

Tuesday, August 18, 2009

So many exhibits...


Exhibit A: Enter in Funny Corn Bathing Suit...which is very high on the funny, but very low on the corn. To be exact, there is no corn involved, but don't tell that to the 3 year old who has always thought that a pineapple was eerily similar to corn...corn that is obviously funny. Regardless, this is what she has called this, her favorite bathing suit, for the past 2+ years she has owned it. Yes, you read that right...2+ years of ownership, meaning that the suit was the ripe ole' size of an 18 month old. The kid doesn't grow fast. However, a kiddo that is related to me will not keep a bodunkadunk the size of an 18 month old for too terribly long...
Exhibit B: The reason why the funny corn bathing suit has now gone into hiding:
Exhibit C...and D-G: Don't you just LOVE Lillipops new fall line of clothing? I still have a few more pieces to photograph on the girls, and I am simply eating up these dresses. They are so gorgeous! And to answer a previous question, no, I do not design these clothes. That amazing feat would be due to the superbly talented Jayme at Lillipops Designs. She is seriously one of the most talented women I have ever known! I just take a few shots of her wonderful work...she does all the hard stuff.
Exhibit whateverlettersareleft: How cute is this kid?! This is the great Super Cooper...aka: Wanda's youngest grandson; other alias: Nathan's partner in crime; alternate title: the kid who will eventually teach my son how to eat! He's a tank! And has the most adorable eyes and smile I have seen in a while. Love this little guy...

Monday, August 17, 2009

She'll be on the news some day...I can assure you


"I swanee, I was just watchin' the Jeopardy show and I hear a train comin' right at us. And dat's when Claude done told me 'git in da bath, dats a turnador'. I ain't seen the chickens ever since. Took em' right up to Jesus."

Friday, August 14, 2009

Dog days...


This week has flown by, as we have tried to cram in as much end-of-summer activities as we can. Abby and Emma spent the first part of the week with Wandy (their church grandmother), while Nathan had an ultrasound and doctor's appt. It was quite quiet around here for a couple of days, and Nateman really seemed to enjoy the full reign of the house.The girls went to a splash park, swimming, and to the "HokeyPinokey" swamp...otherwise known as the Okeefenokee. They loved being spoiled and staying up late with their Wandy and "Budda Jimmy". They were both quite heartbroken when we had to make the trek back home, and I would be lying if I didn't say that the nice quiet 2 day break was both very nice and very quiet.
When I went to pick the girls up, I decided to take some pictures of them in the new fall line of Lillipops while we were in the country. Here is just a wee little sneak peak of that session...more to come later.
The rest of the week has been just a good as the first...a lot of swimming, lounging around in our PJs, turning 28 years old, and trying to tame some of the mammoth tantrums that the spoiled little dude has learned. The latter not being as fun as the rest...for any of us.

Wednesday, August 12, 2009

Kids and their piercings these days...


Any ideas on what is attached to the munchkin's nose?
See it now? She's my brave one. She even kept the end of its tail as a souvenir. It's baby lizard season around here, and this just so happens to be a great time for lizard hunting because they are unusually slow right now. The kids love catching lizards. The lizards have signs posted all over the neighborhood with skulls and crossbones over a picture of our yard. Some never learn though...

Friday, August 7, 2009

Lazy summer mornings


I realized that I hadn't posted any pictures recently of the one who will start kindergarten in a couple of weeks...but we aren't going to talk about that. Sniff.

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