So this is the reason I haven't updated in ages....

I got married to my best friend!! I'll tell you the story soon... I will do my best to write it very soon. I am now the step mother of two amazing kiddos, Lily and Landen. Noel is so happy to have siblings! She has been doing amazing; she is off the vent during the day and only needs it at night. Unfortunately she was very sick the day of the wedding; she made it to the ceremony but missed out on the reception. She has just blossomed though in the last few months, it's such a blessing from the Lord! I have also been in CNA school, so all in all it's been a busy, life changing three months! I love you all and I will do my best to keep you updated better!

"Super" Infection

Noel is back in the hospital, she was discharged on Tuesday afternoon and was back in the hospital on Wednesday night at 11:00. We finally have some answers; to start with she has adenovirus, which is a respiratory virus that can also cause other complications. Noel is suffering from some of those complications, her intestines have shut down and she's had a lot of discomfort, she's on day 8 of fevers and she's dehydrated. The doctors think she has adenovirus on top of somethings else, they just don't know what else yet. She has been anemic for a while now, (since March) and that is also concerning because they've had to take a large amount of blood for all the cultures. She'll probably end up getting another blood transfusion to help get her iron levels up again. All in all she's one sick little girl; I haven't seen her look this bad ever. Unfortunately since it's a virus all we can do is treat the symptoms and wait for it run it's course. Poor girl I wish I could make her feel better and I wish she didn't have to go through all of this, it's so hard seeing your little girl so sick.

Back in the Hospital

Noel's been in the PICU for a couple days, she was admitted with high fevers; 103 for two days. They have cultured everything they can and so far nothing is growing and there is nothing to explain the fevers. Noel and I are so over this in-and-out of the hospital every couple of weeks... it gets so wearing. Please pray hard for Noel to start tolerating food in her stomach; if she didn't have a central line for her TPN we wouldn't have to be in the hospital so much. That's the new goal and plan.... food through Noel's tummy. God has been showing me so much through this last hospital episode that I need to give my trust and faith back to Him, I've started listening too much to "the doctors" and I've forgotten to listen to myself; sure they know a lot but they don't know everything and especially when it comes to Noel, they're not the experts I am. So please pray for her... maybe every time you eat you'll think of Noel and remember to pray for her tummy to be healed! Thank so much for all your love and support,
Tina

Prayers

Noel is going in this morning for a blood transfusion; she is severely anemic and they can't get her iron any other way, so they are going to give her some new iron rich blood. This procedure is pretty simple and straight forward, but Noel has never gotten blood before so it's a new experience for her. Please pray that everything goes easy and with no complications. I'll update later today and let you know how it went. Also please pray for our good buddy Faith who is currently in the hospital too.

Noel's New Glasses!

Here are some pictures of Noel's super-cute new galsses!

And she's actually keeping them on her face, well so far.... we'll see!

One small step for Noel; One giant leap for the rest of her life!!!!

This is short and SWEET; and it's not the best quality... I really need a new camera! But this is so amazing I just had to show this to everyone!!!! Noel is taking steps all by herself!!! Thank you Lord for such an amazing blessing!!

Blessed!

I haven't had much to write about lately and yet I've had so much to write about; some days I feel I don't even have time to sit for a few minutes to update Noel's blog.

The biggest thing I have to say is how thankful and blessed I am to be Noel's mother; she is such an amazing little girl, I'm so lucky to be a part of her life. She has come so far from a tiny infant who was to weak to even cry. I was going through old paperwork and found Noel IFSP (Individualized Family Service Plan: which basically tells where your child needs help and where they have strengths; in order to get them the right kinds of therapies.) The little girl they talked about in those notes is not the little girl who is here with me today. Some days I don't remember how far she's come, until I look back at where she was. Granted when this IFSP was done Noel was only 4 months old, it was just weeks before she got her G-tube. After she got a G-tube and was finally able to get more nutrition she started doing so much more.... and then she got a trach and a vent; she was able to breath, she started doing even more things... and now since she's been on TPN and she's finally getting adequate nutrition again she is doing even more! When that IFSP was done I knew my little girl was special and our lives were going to look different than everyone I knew; but at that time I never knew I would have such a medically fragile daughter. I also never knew how far Noel would come thanks to all the medical interventions. Anytime you're faced with having to hook your child up to yet another machine it's never an easy choice... and it's never an easy life, but if by doing so you can give your child a better quality of life it's always the best choice. I am so thankful and truly blessed that the Lord has given me such a perfect little angel to raise and to learn life lessons from.

Here are some pictures to show how far she has come:

Then...

In this picture I had to prop Noel up on blankets and

pillows just so I could take a picture of here up right.

Now!

Here Noel is standing up with just a little support form me behind her!

Then...

This was Easter 07,

she is also propped up with many things under the blankets.

Now!

Here is Easter 09,

Noel is sitting up all by herself on her little car

(she was getting ready to find Easter eggs.)

And this picture is just too cute,

she is such a sweetheart!

The post I didn't want to write...

So from the title you can imagine that this is not going to be a very happy post. I finally got in touch with Noel's GI Doctor this morning because yes her symptoms are getting worse...again. She has been retching at least every 30 min since yesterday, the last time I feed her was yesterday at 11:00am and this morning she is still retching and she has ton's of gastric out put coming out of her stomach. When I say retching I mean full body, tongue out, saliva pooling retching. Poor little girl she has been sleeping all morning, the retching is wearing her out. So back to the discussion with the Doctor; he told me again that it sounds like she may have Chronic Intestinal Pseudo-Obstruction and he told me for the third time she may need a transplant. This word has been brought up a number of times during all of our hospital stays, instead of saying it... I was hoping it would go away. I was hoping that things would get better... I was hoping I didn't have to tell you that Noel might need an intestinal transplant. But that's where things stand right now, she may need one. Our trip to Ohio probably won't bring us the answers we would hope for, they'll probably only answer the question of does she need a transplant? Granted we are still months away from a decision and months away from a surgery but I just wanted to share this new information with you and ask for your prayers.
Tina

GO GREEN and DONATE LIFE

April is Organ Donation Awareness Month; please take the time to consider being an organ and tissue donor. Lord knows you can't take your organs with you when you die, so why not leave them for someone else to continue living. None of us will ever now when we or a loved one might be the recipient of organs, if those people hadn't choose to donate life than we would never get the life saving organs. Right now a little girl is fighting for her life in Nebraska, she's about to undergo another life-saving transplant surgery, if you need a reason to donate life please visit her website and see all that she has been through; I'm sure that's all the convincing you'll need. Please be aware that you have to do more than just sign the back of your license to be an organ donor, you also need to sign up with the Donor Registry in the State you live in, Here is a link you can go to. Please talk to your families and friends about the decision you made to be an Organ donor and talk to them about becoming a donor also; give a gift that will never stop giving.

Update: Noel is out of the Hospital and she's doing great! They think she just had a respiratory virus.

Yes we're back....................

Urgh!!! We got re-admitted to the hospital on Tuesday afternoon... I can't believe it. Well the good news is that Noel is doing fine. She spiked a fever on Tuesday and any time her temp goes above 101 it's an automatic 48 hour trip to the hospital. The reason for that is since she has a central line she can get a blood infection any time, so we always have to be cautious and bring her in to the hospital. I'm starting to think that Noel's is going to need therapy though, she really likes it here at the hospital; once her temp came down you would have thought I had taken her to Disneyland... silly girl. I think she likes it here because she gets so much attention and on trips like these she doesn't get poked and prodded much. The plan is to discharge tomorrow as long as nothing grows in her cultures overnight. Somedays I wonder is God trying to teach me something? Am I just not getting it? Maybe it's patience or thankfulness or.... well I'm willing to learn. Thanks,
Tina

Home Sweet Home...again!!

We made it home Friday night, I can't believe we got out of the hospital so soon I was beginning to think you couldn't be admitted to the hospital without staying at least a month!!
Noel is doing much better now that she doesn't have barium inside of her. She is even taking small, very very small, amounts of formula through her g-tube. And during this admission we finally talked about weaning her off the Vent!!! Yay!
Her G.I. issues have some what overshadowed the progress she is making, it wasn't until a new attending (one we've haven't met yet, go figure) saw her and asked the all important question why is she on a vent? Well we know why...RSV. But why is she still on a Vent??? He saw how well she was sitting on her own and how interactive she was and said there should be no reason that she can't be off the vent for at least part of the day. Oh yay progress on one front! So the plan is to start her out slow for one to two hours a day off her vent and on a Cardin valve; this valve uses the pressure of 8 liters of oxygen to help keep Noel's lungs inflated so she doesn't have to do so much work on her own. But with this valve she will be initiating all of her own breathing. We have been trying this for small amounts of time and so far so good.
So the G.I. plan is to still go to Ohio to see specialist's, but it might not be for a couple of months. I'm looking into getting an Angel Flight to get Noel out there, but if anyone has any other ideas I'm all ears!

Here are some pictures from our month stay in the hospital that I wanted to share with you:

Hope you have a great day! Thanks for checking on Noel,

Tina

Back in the Hospital

Yup you read right, Noel is back in the hospital. We came down Tuesday night (in an ambulance this time) because Noel got worse again. An abdominal x-ray showed that Noel still had Barium in here stomach from a swallow study done 10 days earlier. This is the same thing that happened on her last admission. The moral of the story is no more barium contrast studies for Noel. She has been doing much better ever since we got her bowels "cleaned out." We are currently in the middle of a blizzard so I don't think we'll get discharged for at lease a couple of days.
Other than that Noel went to the eye doctor on Tuesday and was diagnosed with exotropia, which means that her eye's don't work together; because of her weak muscles her eyes are also affected. The most significant effect on her vision will be her depth perception. This diagnosis was a hard one for me to hear; I think it was the realization that her disease effects her from her head to her feet. We have been so lucky to see Noel make so much progress in the last year, but it's at appointments like these, when we get another diagnosis, when it makes me realize she does have a very horrible muscular disease. She has a follow up appointment with her eye doctor in a month and she may end up with glasses to help correct her vision. Thanks ahead of time for all the new prayers and thoughts.
Tina

Craziness!!

Craziness; that pretty much sums up my weekend. We were discharged on Wednesday afternoon, yay! I came home to my parents house, again; there is no way to take Noel back to Grand Junction at this point, she has too many follow up appointments and too many new piece's of hardware for me to be comfortable with her so far away from Children's. I'm sorry I haven't had time to update, this is the first time I have sat down at the computer since we left the Hospital. Since we've been home I've been going non-stop, unpacking, organizing, taking care of a toddler who has a vent, trach, g-j tube, broviak-which is hooked up to TPN 22 hours a day... I think you get my drift. As far as Noel's stomach, she isn't making much progress at all. She left the hospital taking about an ounce of pedilite every three hours, I tried adding a tiny bit (7mls) of formula and she did ok at first, but by the next morning she looked really sick again. I haven't been pushing her stomach to much the last few days but she is still retching a lot. Unfortunately we will have to make a trip to Columbus, OH soon to see specialists out there at the Nationwide Children's Hospital, I'm not sure when or how we'll get there but this looks like our only option, I'll let you know more once we hear from her GI doc's.
Other than that I'm just so happy to be out of the hospital. Being in the hospital isn't as hard for me as it use to be; I know a family who just spent over a year in the hospital where their daughter fought and struggled everyday. Knowing them makes being in the hospital for a couple of weeks not such a big deal; it has also taught me to never once take for granted the precious moments we get to spend outside the walls of the hospital. And as it looks right now we may be spending more time there soon, so we'll have to make every moment count!
Tina

Update

Sorry for not posting an update sooner, we have been so busy. Noel got her other chest tube out on Tuesday, yay! And since then she has been a ball of energy. She has been very active and she hasn't been taking a regular nap. I've only had bits of time to myself and it usually gets taken over by doctors or other hospital staff coming to talk about discharge! It looks like we'll be able to go home sometime next week. We will be going to my parents house in Black Hawk so that Noel can stay close to the hospital. She is still on 100% IV nutrition so it's going to take some getting use to having yet another medical component to our life. I just wanted to tell everyone thank you so much for your thoughts and prayers through this time, I have felt and appreciated all of them!
Love,
Tina

Update

Sorry to leave you hanging. Yesterday was a very hard day. Noel was in a lot of pain because of the chest tube; every time she took a deep breath she could feel them. We had her on lots of pain medicine and by the afternoon she was feeling a little better. I was super tired too so I didn’t get much done. This morning they took out her left chest tube, which was another very painful procedure, but with the help of pain meds she did alright. Her right chest tube (the right side is where the nick of her lungs happened) is still in and they’re still suctioning the air out. Hopefully the right chest tube will come out in the morning. As for the Broviak, the surgeon couldn’t find Noels sub-clavicle vein on either side of her chest; which means that Noel’s vascular structure is different than most peoples. The surgeon had no choice but to put the Broviak in her right thigh; it’s not the most ideal spot but it will work. We have a care conference scheduled for Monday to meet with all her doctor is one spot to see where we go from here. Thank you again for all your thoughts and prayers,
Tina

Chest Tube

Noel is going back to surgery at about 2am to get two chest tubes put in. During the broviak surgery (which did not go as planned, but I’ll update that later,) she received a Pneumothorax (which means her lung got nicked when they were trying to place the broviak and some air escaped into the layer outside of her lungs; with the placement of these chest tubes the air will drain out. I’ll update soon, please pray.
Tina

Noel's Surgery

Noel’s going into surgery at 5:30 tonight to get her Broviak. The same surgeon who has done her other operations will be doing this , so that’s good. Please pray that everything goes well and that she recovery’s quickly. I will update as soon as possible to let you know how things went. Thanks so much for being there for us on this tough journey.
Tina

Update

No news is good news right? Well no not really. Sorry I didn’t update sooner, but I was really hoping to deliver good news. Unfortunately we are now on to one of our worse case scenarios, Noel didn’t handle the pedilite at even 5ml per hour. Since she couldn’t handle the pedilite she is now on gut-rest and is getting 100% of her nutrition through her IV. She is going to be on TPN indefinitely, so sometime this week they are going to place a broviak (a more permanent central line to receive her IV nutrition from. As of now they are diagnosing her with low-motility (things move slow ) from her stomach to her bowels, sadly this is not associated with her underlying Muscle issues; Muscular Dystrophy does not typically effect the smooth muscles (heart, liver, intestines) so she may have a completely separate intestinal issue . We will continue to slowly try to feed her through her intestines; it’s a very slow process so it could be months before we’re able to feed her formula again. That's all for now,
Tina

When you work in a Hospital

Written by a parent (me) of a child with special needs

When you work in a hospital please be aware that you may be the only face that we see; you can brighten our day with a simplest gesture or smile; or you can darken our already frustrating day.

When you work in a hospital please don’t forget these are our children lying helpless and sick, we must be their voices and strength, but we are still human not super heroes.

When you work in a Hospital please understand that every word you say is magnified; when you say 10 minutes please recognize that to you 10 minutes and 25 might be the same, but to someone who’s watching and waiting for answers that extra 15 minutes can feel like an hour.

When you work in a hospital please remember that this may be your job, but this is our life. We don’t get weekends, holidays or vacations; we are on the clock 24/7.

When you work in a hospital you may be an expert in your field, but please remember that we’re the experts when it comes to our children, you may have years of schooling behind you but we have hours and hours of on the job training.

When you work in a hospital please don’t forget, we’re not here by choice; if it was up to us we would have stayed home, but we know we can’t do it alone. We’ve brought them here so with your help our children may be healed.

So this poem might give you some idea of the day I've had, long and frustrating. Noel's feeding issues didn't get any better today. She was pretty out of it all day, she slept most of the day. The GI Doc's finally came to see us (only 24 hours after they were first called) only to bring bad news. They don't have any answers either as to why Noel is having such a hard time tolerating feeds. Another abdominal x-ray was done to see the position of her j-tube and it's still in the right place. So the plan is to start giving her pedilite through her j-tube at 5ml per hour and see how she handles it, if she does good then we will increase it slowly. The best case scenario would be: she would tolerate the pedilite and then we could slowly mix in her formula. Once we start increasing the formula we might have to increase by only 1ml per 12 hours. So for those of you wondering how long that will take, you need to multiple 60ml (the total amount of fluid she requires per hour) by 12. And that's the best case scenario. Worst case scenario involves surgery along with other things.
Noel is scheduled to get a PIC line in the morning, because she'll need to be on TPN (IV nutrition) for an extended amount of time she needs to have better access. I'll let you know how tomorrow goes.
Tina

One step forward, Two steps back

If at first you don’t succeed try, try again.
We have been trying things and so far are progress is very slow, slower than we had hoped. As I said before since we are now feeding Noel’s intestines we have to start out slow. If you feed the gut to fast a condition called “gastric dumping syndrome” can occur; this happens when you introduce food to fast into the gut and it can not keep up so it gets ride of all of the food (diarrhea) and none of the nutrients are absorbed. So we have been giving Noel her food at a rate of 10ml (which means she gets 10ml of food an hour; an ounce is 30ml just to give you an idea of how little that is.) The plan was to increase her rate by 5ml every 12 hours. She was doing fairly well at 10 and 15 but when the rate was turned up to 20ml/hour was when she started to have more retching and more bile drain from her stomach. Also, we gave her medicine into her stomach at 10am and it was still coming back out unabsorbed at 2:30pm.
So now we turned her feed back down to 10ml/hour, we might have to increase by only 1ml every 12 hours. Since her problems started so late in the day, we probably won’t hear form her GI Doctors until the morning to see what they want to do. Until then she is still receiving her main nutrition through TPN and Lipids, which is nutrition through her IV. This is so frustrating; I really don’t know what else we can do. I hope we can try something that will work. Thanks for checking on her and thanks for your thoughts and prayers!
Tina

Hospital Update

There wasn’t much to update over the weekend, sadly weekends in the hospital are very long, slow and not much gets done. We tried feeding Noel in small amounts over the weekend but she didn’t tolerate even the small amounts.
Today was a busy day, Noel got another abdominal x-ray this morning which showed that she still has barium in her colon from a swallow study last Tuesday; this isn’t normal for the barium to still be there so we can assume that she has slow moving bowels. We then discussed “the plan” with the Doctors which was: start Noel on TPN (IV nutrition), try cleaning out her bowels and try slowing down her feed rate. But in the middle of the day after another consult from GI the plan changed to placing a GJ-Tube. The overall consensus is that Noel does have a motility problem which means that her stomach is slow at getting her food down into her intestines. She was then taken to Interventional Radiology to place the GJ-tube. The doctor had a difficult time placing the j-tube because Noel’s intestines looped around so much (also could be part of the feeding problems). So as I write tonight she has her GJ tube and they are now starting her IV nutrition until she is able to take her full feed into her new tube.
The bad news is that she has lost weight since we’ve been here; she now weighs the same that she did when we left the hospital 9 months ago; I really hope this tube will help her gain weight. She is also growing some bacteria in her trach (not a big surprise) so she is on antibiotics to help keep it under control.
So for now that’s where things are, I’m hoping that Noel will tolerate her GJ-tube feeds and that we can get her feeding rate up to where it needs to be so we can go home soon. Thanks for checking in on us!
Tina

Back in the Hospital

Well we’re back at The Children’s Hospital, surprisingly 947 looks just like 846. Unfortunately Noel’s tummy is the reason we’re here in the height of Respiratory Season. Please pray that she doesn’t catch a bug while we’re here. Noel has had feeding issues ever since she first got a g-tube in April 07, she then got a nissen which was suppose to stop her throwing up, unfortunately it doesn’t stop the feeling of having to throw up, it just makes it so nothing will come out. So Noel has been retching ever since October 07, the doctors said it should get better within weeks of her surgery; we’re here a year and a half later and things haven’t gotten better, they’ve progressively gotten worse. I have taken her to doctor after doctor to try and get answers and then at some point I just got use to her feeding issues. It wasn’t until this past weekend when I talked with other moms who children have g-tubes that I realized just how bad things are with Noel.
The doctors are talking about placing a G-J feeding tube this tube would bypass her stomach and feed her straight into her jejunum (her small intestines.) If this procedure works properly Noel should be able to eat without retching; something she’s never been able to do. We have tried different formulas, different feed rates, different positions, everything and nothing seems to help. The biggest draw back to the G-J tube is that Noel would have to eat 24/7. Since there isn’t extra room for the food to sit in the small intestines you have to give a small amount of food continuously. The thing is right now with how long it takes her to eat she is almost getting a continuous feed. So we’ll see how things go today, I want then to try and figure out why she’s retching so that way when she is ready to use her stomach to eat we won’t have to go through all of this again. So that’s all for now, but I’ll keep you posted.
Tina

Noel's Anniversary

This post is a little long and early
but Noel and I will be out of town on Monday.

Monday marks Noel’s year anniversary with a trach. This may sound sad but I actually had to go back to Noel’s Carepage to find out the exact date she got her trach. At the time everything happened so fast it was just a blur. I do however, remember the first time I knew a trach would be in our near future. On January 23 early in the morning I walked out of the elevator at Children’s Hospital to a site that made me very sad. I saw a little girl who looked a lot like Noel, dark hair and all, her mom was holding her and she had tubes. She was such a little girl maybe a year old and she had all of these tubes coming out of her neck. Up until then the only experience I had with trachs was through pictures my Aunt, who worked in a NICU, had of little kids with trachs. The only thing I remembered of the pictures was something blue was always attached to the trach. So I did now what was going on with the little girl but the only thing I could think was “No, No God, not me, not Noel, please?” It was just that morning that I finally asked the doctors why they were so cautious to intubate Noel. The answer was if they had to intubate her they were afraid that they could never get the tube back out, which would mean she would end up with a trach. Seeing that little girl made me think, “I can’t do that, there’s no way, Noel is hard enough to handle now I can’t imagine being able to hold her or move her with all of those tubes.” I spent the next hour crying to Scott and he just kept re-assuring me that Noel wasn’t going to get a trach; I wanted to believe him but somehow I knew she was going to end up with one.
It was the next night at 11:30 when they had to intubate Noel, the second they said those words I knew they were really saying “Noel is ultimately going to end up with a trach.” The next few weeks we tried and failed many times at extubating Noel, all the while I knew how it would end. Instead of being in denial about the inevitable I started to get information; of course I turned straight to Aaron’s Page it’s a website all about trachs, it has tons of stories about children with trachs. The more I learned the more I realized that yes I can do this and ultimately I’m going to have to. We had lots of support before her surgery; we met two amazing kids (Faith and Milo) and their families who made the scary process so much easier.
In the year since she received her trach life has completely changed. In the beginning we thought Noel would be off the vent in no time; a year later she is still on it. While at times I would love to move her without tubes, run to the store without a vent, sleep without annoying alarms; at other times I can’t help but be so thankful she has this piece of machinery, it’s given her so much. The benefits she has received from this life-support machine far out ways the hassles and headaches it’s given me. This vent has given Noel life; something that is so precious and so miraculous. So while I would love to wish the Vent farewell I am deeply indebted to this sometimes highly-annoying piece of technology; it has taken Noel far beyond anywhere I could have imagined.

Wide Awake!

OK so I've been wide awake since 3 am, it's now almost 6. Should I try going back to bed? Or should I make my way to the kitchen to make a pot of coffee? I think the latter is the one I'll end up doing. And why am I awake you might ask yourself?
Well lest see was it…
A: Noel’s pulse ox probe going off because her O2 was dropping; looks like I didn’t get her liquid oxygen filled in time (Reminder of a phone call to make today.) So I had to connect her to a portable O2 Canister. Alright fixed that now back to sleep.
Nope; now it seems that her pulse ox doesn’t want to “pick up” at all and after 5 minutes of beep beep beeep beeeep beep I threw in the towel, I know she has O2 so she should be ok. Back to sleep…
But then there was…
B: Now Noel’s Vent needs it’s own turn to torment me with Alarms, more beep beep beeep this time it’s low pressure because when Noel’s sleeps she get’s really comfy and lets all of the air come out of her nose and mouth. Ok reposition Noel; check… adjust the vent settings; Check. Now I can go back to sleep…
Nope...
C: right when I fall back to sleep, Noel’s feeding pump alarms me right out of sleep yet again. Turn that off, ok back to sleep… Now I’m just laying here thinking of all the things I don’t want to be thinking about right now, worrying about things I have absolutely no control over in the dead on night. Fine I throw in the towel (yet again) and decided to at least get out of bed (it's only 3 am why not?) Maybe I can do something productive. other than tossing and turning. Looks like I’ll get to watch the sun-rise, it’s something I’ve been meaning to do for awhile! Maybe tonight night I’ll catch some zzz’s?
P.S. Jen I know you’re probably thinking wait a minute Tina got more sleep this one night than I’ve gotten in forever… Sorry; Here’s to hoping that you can catch some zzz’s tonight too!

Some People!?!?

This morning I called to change Noel’s doctor to our pervious pediatric practice; I was told about this great doctor who has recently seen a trach-vented patient. I am really excited at the possibility of having a doctor that I am comfortable with and confident in . So I called the office and since Noel has been a patient there before all of her records pulled up. The receptionist proceeds to tell me that we had an appointment that we missed to she’s not sure if Noel can be seen there. She told me the appointment was on January 21, 2008, hmm, Noel was laying in the PICU at The Children’s Hospital at the time, why wasn’t cancelling the appointment the first thing on my mind? I tell the receptionist, “Noel was in the hospital at the time barley alive so that’s why I didn’t cancel it. ”She then tells me, very nonchalantly, “Oh I know, but you still have to cancel your appointment.” What??? You know? You know what it’s like to see your baby laying there helpless unable to breath on her own? Seeing her condition rapidly worsen? Were you there? Do you know the life we have lived this last year with a two year old who is on life-support?? I can’t believe how absolutely insensitive people can be. Please don’t tell me you know, that was so rude! I know it’s just a silly receptionist, but for some reason her in-sensitiveness really hurt me. It’s hard sometimes even when people who we know say they know what we’re going through, let alone some stranger over the phone. It would have been nice if she could have a least acknowledge what I told her and at least followed up with an “I am sorry to hear that.” Needless to say I am going to talk with the office manager about the situation. I know I shouldn’t expect more out of people these days, but still a little human respect would be nice. Thanks for letting me vent.

Noel's New Ride!!

Noel got her first wheelchair Friday, we took it out in the caul-de-sac to test it out. She has a lot to learn but it's so exciting that someday soon she'll be mobile!!