Thursday, February 26, 2009

And the appts continue...


So, I woke up even sicker today and boogied my behind on over to the doc mid-morning who prescribed some antibiotics and nasal spray for the nasty sinus infection that has decided to make camp in none other than my sinuses. Who would have thunked?! By this evening, my voice was gone...as in GONE! Poof. Nada. It was then that I realized how much I truly do talk in a day's span and instantly felt a little sorry for my dear hubby. The lack of voice grew on me after a while as the girls started their routine fight every half-hour and came to me to settle the disagreement, to which I just shrugged my shoulders and pointed to my speechless mouth. This gesture alone caused them to turn to one another and *gasp* settle the fight themselves. Now, why didn't I loose my voice 2 years ago when the sibling rivalry started in the first place?
Hopefully today will be the last of the medical posts for a while...until all the referrals for the other specialists start making appts in the next few months. I really am a little afraid of what our calendar is going to look like over the next couple of months due to the influx of referrals we have recently received.
Today was Nate's 12 month well visit with our pediatrician...or as we named it: the "not your typical well visit"well visit as we discussed a plan of action for Nathan's care. It was truly an outstanding appt! Our plan right now is to have Nathan receive yearly blood draws and urinalysis to check for organ dysfunction, get an annual echo and ekg, annual eye exam and hearing test. She is making the referral for us to see an audiologist for these hearing tests, as we know that mito can affect hearing sometimes. She is also going to help us apply for our state's Children's Medical Services that should pick up some of the costs our insurance doesn't, especially since this is a chronic illness with many medical expenses.
She said that putting Nate on PediaSure was a good idea since his weight percentile is so low. We have a theory on why Nathan looks better in the weight department than what it says on paper...muscle mass is heavier than fat, so since Nathan is low-toned in his mucles, they just don't weigh as much as most kid's. Granted, that's just a theory, but it sounds pretty good, huh? Abby is the skinniest kid ever (she wore Emma's 3T pants the other day as capris...they totally fit her perfectly in the waist), but she is also the most muscular 5 year old I have ever seen. Even though she is skinny-minnie, she is in the 65% for weight.
Our pediatrician heard Nathan's heart murmur again. He had the murmur when he was a newborn, but we thought he had grown out of it like most newborn's do. It is probably still a completely innocent murmur, but it's good that he will be seeing a cardiologist soon to have a better check.

Speaking of Cardiologists, Hailey (my neice) went to her cardiologist again yesterday, and they are bumping her heart surgery up to spring...like in really soon. The cardiologist was going to meet with the surgeons, so we'll know more of an accurate time frame fairly soon. Keep her and Ashley in your prayers, please.

And we still haven't gotten the final word on whether or not Nathan will be accepted into the mitochondrial study here. They are waiting on the last of his tests (his skin fibroblasts that Dr. Shoffner sent to Duke) to see if he meets their protocol or not. Hopefully we will know more about this in the next week or two.
The past few weeks have given us a lot to digest, and while we are still trying to find a good method to juggling the round of doctor visits, we are finally settling into somewhat of a rythym. For the past year, I've been saying, "I'm looking forward to our lives returning back to normal" while thinking of the timely-scheduled days of a year+ ago when the most exciting thing we did was push back naptime an hour so we could meet a friend at the park. I've realized that those days are indeed over, and we have created a new normal around here. And while it can get super crazy busy at times, we still have just as much fun day-in and day-out as we did when we lived that seemingly perfect-structured life. I'm starting to get a bit used to flying by the seat of my pants. It's not easy all the time, but we're hanging on and enjoying the everyday moments.

Wednesday, February 25, 2009

Party hard, man!


The little dude partied me out yesterday, and I ended up hitting the hay at 9:00 (I feel like such a grown up for going to bed so early). When I woke up this morning, I had an explanation for turning it in early...with a barely audible voice in between sniffles, I gave Jay the head's up, "Ugh, I'm sick". Who knew that if you abused your body with weeks of intense stress and pure exhaustion, that it would start to give up on you and make you start to take it easy?
Nathan's birthday started with a very frustrating trip to see his GI doc. Mitochondrial Disease has had a lot of research done in the past few years, and most doctors are not up to date on the new info, precautions and practices with these kids. The first time we saw our GI doc, I mentioned that there was suspicion that Nate had mito, and he said that since his point mutations (genetic tests for MELAS, MERRF, and NARD...3 strains of mitochondrial disease) were negative, that he definitely didn't have mito. I should have known then to look for another GI doc because that guy obviously had no clue about the disease at all, as those were just 3 of numerous types of this disease. (I know that is confusing, and I hope to write more on the genetics of this disease in the future.) But I gave the doc the benefit of the doubt and didn't let first impressions get in the way of trying to figure out if he was right for Nathan or not...obviously I should have. After 3 frustrating appts with him, we are going to make sure we are scheduled with a new doc in that specialty from now on.
I did meet with the Physician's Assistant they had, and I loved her greatly! She was caring and concerned and said that she wants to help us along this journey. The highlights of the appt (while trying not to dwell on the frustrating parts)... they are a little concerned about Nate's weight. He definitely has some fat reserves (gotta love those squishable thighs), but he is still sitting at the 3rd% for weight. A lot of mito kids struggle with weight often, so they want us to start giving Nathan some PediaSure to help plump him up so we hopefully won't have to worry about lack of weight in the future.His reflux is finally somewhat under control, but we have to change his motility med (erythromycin) because it is widely considered to be mito toxic. Since it is working so well right now and we aren't seeing any problems with it, the doc doesn't want to change. Unfortunately, it can (doesn't always, but can) cause damage that we won't see for quite a while, and we just can't be sure if it is causing additional damage to his mitochondria or not, so we really need to try something different. On the other front, the other drug that is usually prescribed for delayed gastric emptying can cause pretty tough neurological side effects. The plan of action right now is to do a gastric emptying scan on the little dude to see if we can possibly get away with no meds right now...here's hoping that is the case!!
We have also been referred to a hepatologist to form a plan of action regarding his liver. For the most part, we just need to figure out if there is any involvement with his liver that we need to pay more attention to and see if we can just get away with having the usual yearly liver function labs done when we have the rest of his yearly lab work done for monitoring this disease. And we were referred to our Early Intervention Program for some OT for the little guy. So, big appt. Tomorrow is his 12 month well check with our pediatrician where we will have LOTS to talk about regarding Nathan's care and trying to formulate a plan to be proactive as much as we can with this disease.After the rough start, the rest of his birthday was a blast! We had a little party for him at our friend's house and got a kick at watching destructo demolish a cupcake. He ate his entire cupcake and then helped himself to someone else's. After scrubbing him down, he walked into the kitchen and proceeded to eat the crumbs in the trash pile on the floor. At least now we know how to put weight on him!
We had another party at home. It started with new sand in the sandbox to replace the green, moldy mess that was growing in there previously. Note to self: always put the lid back on the sandbox...especially during the summer rainy season. (Yeah, it's been nasty for a while.) I then made the birthday meal that I always make for the kids' first birthdays: skebbi. Or actually, spaghetti...or whatever your kids call it, cause its always cute to hear them say it. And then he devoured another cupcake and made an interesting view of the bathwater afterwards. Sand, spaghetti, and cupcakes can do a number on the bathtub drain and leave a very interesting greasy ring around the sides, FYI.
I think Nafey boy enjoyed his birthday festivities. He has definitely enjoyed playing with all of his cool new toys today, and I can see him eyeing the left-over cupcakes on the counter. It was a good day all in all...a good day indeed.

Tuesday, February 24, 2009

1 year


My dearest Nathan,

We have a morning ritual, you and I. As soon as I turn on some music to help us get started in our day, you instantly stop what you are doing, toddle your way into my arms and stretch your hand out to meet mine in the air. Then we dance. You throw your head back and instantly erupt in laughter as I spin you around until I'm too dizzy to go further. We rock back and forth to the beat, and each day I thank God for that moment with you. After a while, you toddle back to whatever you were doing previously, and I go see about the morning chores...already looking forward to the next morning when I will see you waddle around the corner with a smile on your face after hearing the music play.

My son, my Nafey boy...one year ago today, I woke to contractions and knew that you would be here soon. The feelings of that day were of excitement, joy, and trepidation...a cacophony of emotions that has not left us since. You were the most beautiful newborn I'd ever seen (don't tell your sisters). It was such an incredible moment to meet our baby boy...a moment I will always remember.

What a year this has been, Nathan. Honestly, I have had a difficult time finding the words to write to you here...I wish my tears could be the words at this moment. Thinking back on events over the past year has thrown me into many of the same emotions we have felt during these very difficult 12 months. There was a stretch of time this past year that we wondered if you would still be with us on your first birthday, and it hurts so much to remember that. The feelings of worry, fear, and dread come rushing to me again...until I think of how God has held us through every trial we have faced with you through this year...and the feeling of peace comes sweeping in to the rescue. My dear son, God has had you wrapped in his loving arms from the time you were conceived.

Your first name means "Gift of God" or "Given by God". You are truly an incredible gift to us from our Heavenly Father by the mere presence of you in our family, but that is not the only way you are a "gift" to us. Your life and the daily struggles you are facing have brought us to our knees often, as we fervently pour our hearts to God asking for guidance and wisdom, or praising and thanking him for blessings. Through your life, God has given us the gift of a closer relationship with Him. Through your life, we have been blessed with the gift of aching and longing for our heavenly home...a place where we will no longer have the daily trials and struggles we face here on earth. Through your life, God has given us and others so many special gifts. My son, you are truly a gift from God, and I couldn't be any happier to be your mother.

Your middle name, Andrew, means "Warrior". Oh my little man, you are indeed a warrior...a fighter against the struggles you face from day to day. You fall and instantly get back up. You get tired, but instead of giving up, you get mad that you can't make your body do the things you want to do. God has given you more determination than I have ever seen in someone so young. It's in your eyes...the desire to do it all. You are a warrior, my son.

You are also the sweetest little boy alive with a smile that can make a statue smile back. That smile, along with your winsome personality has gotten you a long way this past year. You make instant friends wherever you go, and I pray that you continue to have this intense sweetness about you as you grow older.

You will always be my baby boy, no matter how old you are. But for today, you are my big 1 year old. Happy first birthday, Nathan Andrew. You have brought such joy into our lives.

Sunday, February 22, 2009

Ready for a new week


I've realized that you can't really call yourself a "tried and true" parent until you've picked up your kid's poo out of the bathtub...bare-handed. Yeah, gag all ya want. I've done it...with 3 out of 3 kiddos. We're batting 1000 here. It's not something I jump at the occasion for either...especially when the 5 year old is asking thousands of questions about your technique of bare-fistin' it while you hold you breath with each swipe and try your hardest not to scream at the older one for talking so dang much while you are clearly elbows deep in it.

Yeah, it's been that kind of week.

I'll spare all the whiny details, but most of it revolves around the fact that my darling son has decided that he would rather be wide awake and screaming for 2-3 hours in the middle of every single night this week. Me no good mother on no good sleep. Me have lots o' headaches and am very quick to raise my voice at other children who ask lots o' questions.

So, here's hoping that this week starts off on a better foot...or rather, a better night's sleep. Because it just happens to be the little midnight tormentor's 1st birthday in a couple of days.

Thursday, February 19, 2009

Today's appt


We met with Nathan's neurologist again this morning...our first visit with any of the specialists since receiving the diagnosis. We did find out that Nathan does indeed have a defect in Complex III as well, which is what we had suspected. That makes his diagnosis: Mitochondrial Disease, OXPHOS deficiency in Complex I and Complex III.

Along with that, we received 2 new referrals...to cardiology and ophthalmology. Defects in these 2 complexes are notorious for causing heart and eye issues. Since he already has the tendency to be tachypneic, we want to keep an eye on his heart to make sure it isn't the culprit to the fast breathing. We also need to get routine check-ups on his eyes in order to detect any changes in the muscles around his eyes and eyesight changes.

Onto the other organs mito affects, we need to monitor his liver function from time to time since we already know that organ is affected. And we may potentially see a renal specialist in the future (we'll see him for sure if Nathan is accepted into the study) because of his past problems with fluid on his kidneys and his mildly elevated kidney-function labs.

No word on whether he was accepted into the study or not, but we should know more soon. Our neuro was very encouraging about this study (he is one of the docs participating in it). Regardless of if we do get it or not, Nathan is going to start on the mito cocktail of vitamins and supplements soon...if it's through the trial, we'll get an entire year's worth of these meds free. And since one of the supplements costs a pretty penny and is usually not covered by insurance, we are definitely hoping to be accepted into the trial.

I know that possible heart and eye and liver and kidney issues are always tough to read about, so I'll leave you with the mental image of Nathan walking around the livingroom right now, pausing every few minutes to dance to the music playing. It really is rather adorable. That is, until he comes up to me and tries to bite my shoulder (a new skill he has developed, to which I credit the nasty moods the ear infections have put him in lately) and I have to give him my stern mommy-face and "no-no" that always gets the pitiful pokey-lip in return. So on paper, all the information regarding this disease can be overwhelming at times, but in reality, Nathan is still the sweetest little stinker-dink of a boy imagineable. He's very much a rough and tough and smelly little boy, that's for sure. And yes, that is yet another rock in the kid's mouth...'cause I am totally mother of the year in the category of what not to let your kid put in his mouth.

Wednesday, February 18, 2009

I need more hours in the day


This week has been cra-zazy busy in regards to unpacking, washing copious amounts of laundry, and wiping the constant stream of gooey nastiness from Nathan's face. Thankfully, I think the antibiotic is finally starting to work on clearing his ears, though the poor kid is still operating on a short fuse these days. Who knew that ear infections offered lovely side effects such as mammoth tantrums, complete orneriness, and down-right refusal to sleep from the hours of 1 to 3 am. Needless to say, we're all in great moods around here. Care to visit?
After a very long hiatus from our plan to do "school" with the girls a couple of days a week, I decided to dive right back into it again this week. The girls love it, and I love being able to watch the light bulb of knowledge go off in their little brains from time to time. Plus, I feel like we are finally spending some good quality time together again...something that was kind of lost in the shuffle of biopsy, trips to Kentucky, Christmas, Birthdays, etc. over the past few months. The topics of interest this week: the human body (they got a kick out of the fact that the bodunkadunk is actually a muscle, and in Abby's terms "Mama's is the biggest muscle of all!"), trying to write letters that don't end up being 2 feet tall, keeping our gum in our mouths, and loving each other more and screaming at each other less. Next week, we are focusing on why it isn't nice to make fun of Mama's "big muscle" that wiggles when she walks.
We are meeting with Nathan's neurologist tomorrow morning to discuss mito in depth. We are going armed with an enormous list of questions, and he is also going to give us additional precautions and treatment suggestions. One of the things we will discuss is whether we need to travel to visit a mitochondrial specialist once a year or so, or whether he feels comfortable taking on Nathan from here on out. We also hope to get word tomorrow afternoon whether or not Nathan qualifies for a very interesting study on mito taking place here at Shands. All of the docs participating in the study are having a conference call tomorrow morning where they will discuss Nathan's case to see if they want him part of the study. This is very exciting for us, as we will have the opportunity to meet with the mitochondrial researcher here if Nathan is accepted for the trial, along with numerous other specialists and researchers who will be such a help to us along this journey. I won't go into much more detail until we know more, but if you will, please pray that Nathan is accepted into this clinical trial.

Monday, February 16, 2009

Adventure #237 of having a kid named Emma



To read other Emma adventures, click here and here.

Saturday, February 14, 2009

I was right about Minnie's nose


We are home from the wonderful week in Orlando, and Nateman is one sick little dude right now. It is pretty scary how fast he went downhill...just yesterday, he was walking around like normal in between services at the Florida Fellowship Meeting, and today he can barely take a couple of steps at a time without falling. I knew something was up with him late yesterday afternoon when he was extra fussy, but I just figured it was because he was worn out from the long week. But he developed a wet cough last night and then a fever that wasn't his quintessential metabolic fever.
I took the poor little guy to the pediatrician this morning to find out that he has a nasty infection on both of his ears. I was so glad that his lungs sounded clear this morning because he woke up being more tachypneic than normal and having more pronounced intercostal retractions that usually mean that he is having a harder time breathing. I think it is just the infection that is wearing his body out and making these symptoms more pronounced. Hopefully he will be back to normal after a few days of antibiotics...and also hoping that his GI issues don't get any worst than they are currently.
Orlando was a blast! We are so glad that we had the opportunity to go last week...we all have memories that will last a lifetime from this trip. Even though we all loved being at Disney, I can not explain how good it is to be home after staying a week in a hotel room with 3 small hooligans. Sometimes I would pretend that we were all in the good 'ole days of living in a one-roomed house, where we knitted baby booties by lantern-light while we rocked in the rocking chair Pa made in his spare time in between milkin' and mannin' the farm. Except in reality, "knitting" was actually editing pictures on the laptop, the "lantern-light" was the light of the flat-screen TV specifically turned away from the kiddos as not to wake the slumbering pioneers, and the "rocking chair" was replaced with one of the most comfortable beds with perfect pillows I have ever slept on. But let me tell you, these pioneer days are tough.

Okay, seriously...can you sense the lack of sleep here?
It was a great week though. Nathan did exceptionally well until Thursday at Disney where he had a tough time with his body temp. Looking back, I think that was actually when he started having issues with getting sick...he woke up floppy, and he could not deal with the heat and humidity that day. His temp sky-rocketed after lunch and I think he got a bit dehydrated from his high temps all day which caused some serious muscle cramping that night. Let's say that I was really feeling sorry for the family in the room next to our's. After quite a bit of fluids and some motrin, his temp went back to normal and he slept the rest of the night until the ripe ole' time of 5:15am.
We went to Little Union yesterday morning to attend part of the Florida Fellowship Meeting, and it was so wonderful to see friends and family we haven't seen in a while. The girls were so sad when we left to come home. Those little thangs can make long-lasting friends faster than anything, so I promised them that we would definitely go back down soon so they could visit their friends. It was a wonderful meeting, and we are so thankful to have been able to attend part of it and a bit jealous that we didn't get to stay for more. Nate did great yesterday...it wasn't until we were almost home where he started to have trouble.
So, all in all, a wonderful much-needed trip. The girls are still talking ninety miles to nothing about all the rides and attractions they saw at Disney, and their realm of make-believe play has changed entirely to be soley Disney-themed. After seeing Emma dance her way into the hearts of so many characters on this trip, I think I am going to enroll the drama-queen into ballet soon. And after seeing Abby try to do acrobatics on every pole-divider in each ride line we were in, I am looking at finding a cheap gymnastics place around...and realizing that "cheap" and "gymnastics" should never be uttered in the same sentence. Maybe she'll do well with another soccer season this spring instead.

For all of you wondering if you should book that vacation to Orlando or not...yes, taking your kids to Disney is truly worth the cost...even if you need to sell one of them afterwards to pay for it all.

Wednesday, February 11, 2009

Day three and LOTS of pictures


Pictures as promised from Monday at Magic Kingdom (although there are still a ton I need to edit and post later):
We went to Animal Kingdom today (a first for us), and I highly recommend all you future Disney-goers to plan to visit this park on your trip. The kids loved it, we loved it, and none of us were as tired at the end of the day as we were after Magic Kingdom a couple of days ago.
Do wait to meet up with the characters until you get to Animal Kingdom...the lines are so much shorter and move fairly fast. The same middle child who screamed bloody murder when meeting Shamu 9 months ago, absolutely adored meeting this characters this trip. She would go to the over-stuffed creatures and give them the biggest smile and hug I've seen from the chick. Totally worth the trip!
Nafey boy loved the characters as well...especially the ones with big ears and beautiful lashes. He kissed this one right on her nose...a very open-mouthed sugary kiss with a little tongue at the end, to which his mother first thought "ewwww, I wonder how many other snotty-nosed kids' mouths have been on that mouse's nose" and then"Dude! Where in the world did you learn how to kiss like that?! You need a good 'ole talkin' to, boy!" I think he's in love.
Do not take your 5 year olds to see the 3-D Bugs Life show...there is a pretty freakishly scary part in the middle to which the child will claw their way up to the top of the head of the closest adult to them (happened to be her Nana...score!) and scream with the look of absolute horror in her eyes. Seriously, I've never seen her be so scared. And it made me laugh to see her react that way...I know, horrible mother that I am. I tried to be sympathetic, but it was too hilarious to keep all the laughter in. The 3 year old...she loved it. She left a few extra claw marks in her Nana's arm(again, score one for me sitting on the other side of everyone), but she would watch it again in a heartbeat.
The same child who freaked during the Bug Show rode the super scary Mt. Everest rollercoaster with her Nana...yeah, I don't get it either. She was so proud of herself and even told our waiter all about it at dinner tonight. This kid loves rollercoasters!
Do make a point to go on the Safari Ride. We got fast passes for this ride and only had to wait about 15 minutes. It is such a very cool ride, and the animals are right there along the side of the jeep a lot of the times. This was definitely worth the day there. Nathan thought so as well:
Another must-see at Animal Kingdom is the Lion King musical...way cool! There are a few things at each park that are totally worth the price of admission, and this would be one of them. The kids loved it, and it was mine and mom's favorite of the entire day. They have some serious talent working for Disney!
Oh, and the parade...definitely stay to see that. It is a very interactive parade in that all the characters come and shake hands and give hugs to kids on the sidelines. Emma was up dancing and waving the entire time, so she received quite a bit of attention and hugs from everyone. You should have seen the kid beaming from ear to ear...it still makes me heart happy to think of how much she loved today. After having a couple of rough days the first part of this week, she was a jewel today!

Nathan continues to do well. He is tired, but is taking numerous naps on the "park days". He loves all the interesting things to see...and he especially loves being wheeled around in the stroller or held all day. I am so thankful for how well he is doing with the break in our schedule. It has been such a wonderful week so far! Tomorrow is our last day at the parks, and we plan to go to Magic Kingdom again so Emma can ride on Dumbo and the kiddie rollercoaster again. It may be a few days before I post again, but I promise there will be lots more pictures again.

Tuesday, February 10, 2009

Day One...and Two


Well, we have now finished the first two days from our magical week at Disney (can you sense the magical taste of brainwashing from all the magic going on around here?). I have taken lots of pictures already...which are currently on the other computer that is not wanting to have anything to do with the internet connection here, so you'll just have to picture us in your head having such a magical time in the land of all magic.

We went to Magic Kingdom yesterday (see a trend here?) and spent 3 arms and half a leg for that fuzzy feeling in your stomach once you enter into the gates and hear the trumpet of voices singing about "the year of wishes". Seriously, Disney knows how to make you feel all warm and fuzzy. Emma was finally tall enough to ride the kiddie rollercoaster, and she was a hoot! She heard everyone else screaming while they rode it, so she thought that was just what you were supposed to do...scream...the entire time. I was laughing too hard to explain that she didn't have to scream at the top of her lungs. She loved it! Abby was tall enough to ride the Thunder Mountain Railroad, and Emma boo-hooed that she wouldn't be able to ride it for another 6 years...with the rate at which she is growing.

Nana (my mom) was really good for taking the girls on the puke-a-rama rides that their poor parents can't handle...ie: the tea-cups. (Insert cute picture that I took here.) She was also good for holding Nathan in the Dumbo ride line until he fell asleep on her shoulder (insert another cute picture that I took here.) while I threatened Emma within an inch of her life that if she did not stop whining and enjoy this very expensive day, I was going to take her bodunkadunk out of that line and she would never see her precious Dumbo again. (Insert frustration of having a whiny 3 year old at Disney at naptime on a fairly sweaty day here.) And yes, she lost her privilege of riding Dumbo...but just because she decided to throw a little fit that caused her to have to wave at Nana and Abby from the sidelines. Yes, there were lots of tears. And yes, she will get to ride it on Thursday.

Nathan did great at Disney. Since he was riding in the stroller or being held all day, his body temp didn't seem to get too terribly high, and he was in good spirits all day. He loved It's a small world, and he had a stare-down contest with Donald at a meet-n-greet. The day couldn't have been more perfect weather-wise. I coated the kids with sunscreen, but was an idiot and didn't put any on myself. For what its worth, you can definitely get a bit sunburned in Florida in February. I plan to slather up tomorrow.

Today was a rest day...Nateman slept for 3 hours this morning and another 2 this afternoon. The girls didn't rest too well, so here's hoping that Emma and I can keep clear of eachother's throats tomorrow. She and I are not on good grounds this week for some reason. We plan on visiting Animal Kingdom tomorrow and Magic Kingdom again on Thursday. And hopefully, I can get the internet up and running on the other computer so I can post pics later on. So signing off for tonight, from the magical land where dreams come true...or whatever.

Friday, February 6, 2009

What we've been up to this week


Someone commented on the previous post about how wonderful God's timing was in regards to our pre-planned trip to Disney next week. It is also wonderful in regards to the events we had previously planned for this week...
I had previously mentioned about the online forum that I have been a part of for the past few months for families undergoing testing for or who have children with mitochondrial and metabolic diseases. I have had the privilege to create quite a few friendships with the mothers on that board, and I have even had the wonderful opportunity to meet a couple of the families from the forum who were down here seeing specialists at our Children's Hospital.

The Hobbs family traveled down here this week to spend a few days inpatient at the hospital and have some additional out-patient testing done. It was so good to spend some time with Jenny (the mom) this week and "talk shop" about different labs and procedures and tests. And it was especially wonderful to see her precious children and get to know them better. Yesterday, we all met for lunch and let all the kiddos play, and then we took an adventure to our local Natural History Museum. Our kids instantly hit it off, and by the middle of the playdate yesterday, Abby and Michael were holding hands wherever they went. It was mighty adorable, to say the least!
We had planned on them coming to the house to play today after some procedures they had this morning, but Emma woke up with a nasty runny nose that I am positive is the start of a cold. Abby was quite sad and perturbed and said "Why did Emma have to go and get sick and ruin all the fun?!" Oh, that sister love...it's just brimming at the top sometimes. Thankfully, this precious family should be down here every 6 months for routine testing with their specialist, so we have already planned some fun activities for when we get to see them again in September.

It was a great week with this family. It was good to be around Jenny this week, of all weeks and see the sheer enjoyment and happiness this family has despite having medical complexities. And it was so wonderful gaining another friend. Thanks for the fun week, Jenny! See you in a few months.So, we leave for Disney in a few days. We will have internet access in the hotel, so I may be able to post some pictures some next week. We are excited about this trip, but I still haven't even started packing or getting things together for being gone for an entire week. Yikes! And I'm really hoping that Emma's cold is short-lived so that she is ready to tackle the mouse on Monday...and while I'm hoping, here's the hoping that no one else gets sick. Or else it will make for one very unpleasant week ahead.

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