Tales from my life as a mom of 2 sons and 2 daughters

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Cheli On Wednesday, July 8, 2009
Are you an organ donor?
Is it listed on your driver's license that in the event something should happen to you, you want your organs donated to someone else? GREAT!
Does your family and loved ones know of your wishes? Will they honor them if/when the time comes? MAKE SURE THEY WILL!

I am a registered organ donor and have been since I was legally old enough to drive. Although I knew the importance of being a donor for those who need organs, it never really affected me in my life and I never really thought much about it. Then about 2 years ago when I got pregnant with Journey I met a girl who was due almost the same day as I was. Jessica. We talked through e-mail and on message boards with frequency and grew to be friends. In February 2008 I gave birth to Journey and she gave birth to her beautiful little man, Logan. We both relished in our beautiful brand new little boys and enjoyed being new moms together. She was there for me when Journey was diagnosed with his heart problems (and has been there for me during all of Journey's subsequent issues) and when Logan was diagnosed with end-stage renal disease last year Jess was thrown for a loop and had to learn a whole new way of life to accomadate his special needs. A life of labs, dialysis, feeding pumps, medications, and the ever looming transplant.

Logan will be activated on the UNOS waiting list on July 28th, where he will join approximately 80,000 other people waiting for a kidney. He such a beautiful little boy with such a fighters spirit. His story and his life have taught me SO much about being thankful what I have, the importance of organ donation, and the importance of making sure people are aware of the the need for donors. After his transplant Logan will have to take antirejection drugs for the rest of his life. He'll eventually need another kidney transplant (about 10-15 years from now and every 10 to 15 years after) so his medical bills will be a long time coming. And I intend to do everything I can to raise awareness about the need for organ donation to make sure that Logan is able to get his kidney whenever he needs it.

For me, THIS is the face of organ donation... THIS is the face for end stage renal disease.. THIS is why it's so important for people to sign up for donation.

If you aren't a donor and would like more information on becoming a donor, please feel free to comment and I will make sure you have all the information you need. If you have any other questions etc.. feel free to message me or leave comments! And please spread the word about Logan's story and the importance of being a donor to your friends,family, and anyone else you know!

Cheli On Monday, July 6, 2009
I really need to update.. it's been forever since I have.

I finished my 3rd semester of school last week. I somehow managed to keep my 4.0 through the finals :) We'll see what next semester has in store. I am taking Mother/Baby, Health Assessment and Pharmacology 2 next semester. No surprise that I am slightly PSYCHED about the first :) Less than 250 days until I graduate. I'm very excited. I'm ready for the next chapter of our lives to begin. As far as my weight goes.. I'm stuck. I managed to get down to 153 and then gained a few lbs and have been hanging around in the upper 150s-160's since then. Don't think that finals helped much. But now that finals are over, I'm ready to start again. I'd REALLY like to see the 140s sometime soon. Boy you'd think when it's been this long since a real update I'd have more to say about me than I do.. oh well.

River is doing GREAT! He'll be 3 1/2 next month. His therapy for sensory integration is going good. He's made a ton of progress. His speech gets clearer every day. And he seems to understand what we're saying more and more as well. The things he comes up with surprise the heck out of me sometimes. The big news with River is that yesterday he started potty training and he is doing AMAZING! He is having 2 or 3 accidents a day still but he's also going on the big boy potty like 8 or 9 times a day. He is very interested and very into getting to wear his big boy pants and loves the praise he gets for going potty like a big boy. He's amazing! I'm so THRILLED that he's learning this easy. Everyone kept saying don't push him (not that we would have anyway) and he'd do it when he was ready. And it sure seems like it paid off. He's ready and it's going very easy. I'm hoping to have him day trained by the time he starts school next month. Yep that's right, August 24th will be River's first day of preschool! He'll go Monday-Friday 8am to 2pm and we're SO excited to get him back into a routine. I think it's just what he needs. His hair is growing out again. it's been 7 months since we had to cut it. I LOVE it looking long again. I missed it. He looks more like my River now.



Journey will be 17 months old in a little over a week. He's changing so much before our eyes. He's finally getting some hair (blonde) and his eyes have remained that beautiful blue! (YAY). He's got a mouthful of teeth ( 10 at last check) and he's such a chunk. I weighed and measured him here at the house and although they aren't the "official" stats. He is about 30 inches and 24 lbs. hehe. He has perfected the skill of walking. Is even running all over the house now. He's also learned to climb (and loves to show off the skill by climbing onto the couch and running along the cushions). He loves to play with his brother and he's a total momma's boy. He has a sweet beautiful little laugh that makes everyone smile and he's such a cuddle bug. He's learned how to give kisses now (big open mouth sloppy wet ones LOL) and will do so if you ask him for kisses. He's seeing a speech therapist once a week for right now and has learned how to sign "more" and "eat". He's started saying ma ma ma but I don't think he knows what it means yet. Still no actual words in his vocabulary. The speech therapist spoke with his early intervention coordinator a week or so ago and they want to get him started with Occupational Therapy as well. He is on a sippy cup now full time but doesn't seem to have the ability to sit up and drink from it so he has to lay down to do it. They think it has something to do with his trunk muscles. I think if he doesn't start showing some pretty good improvement in the next few months I'm going to talk with Early Intervention and see what programs are available for him that he might get more intensive therapy.

He was scheduled to have surgery on August 12th for his tubes for his ears but we got a call today from the scheduling center saying that the doctor had to go on emergency medical leave and won't be back until September so we have to reschedule the surgery for sometime in September by calling in August sometime to do it. Whatever. At least it's just for tubes. I'm really not even sure he needs the tubes. he hasn't had another ear infection in months. He goes back to GI sometimes this month for a re-eval as we've had him off of his acid reflux medication for a few months and they want to see how he does. He seems to be doing okay with out it. So hopefully come the end of the month he'll be done with one of the specialist. YAY.


Cheli On Monday, May 18, 2009
Journey went today for his official 15 month WCV.
Are ya'll ready for this???
He was 22 lbs 12 oz (22nd percentile) and 31.5 INCHES (57th percentile!!!!!) I made them measure him twice because that means he went up 3.3 inches in 3 months! Weight wise we seem to have hit that point where the weight slows down. He only gained 12 oz in 3 months.
He got 2 shots. The pediatrician wasn't happy with how far he's falling behind on his shots. Oh well. We'll get the religious excemption form so they will leave us alone about it.
And we got a referral for a 2nd opinion for Journey's therapy. She feels that he needs at least twice a week theapy sessions in both occupational and speech therapy. She is going to allow us to get him evaluated at the place River goes to. YAY! Figures now that we're switching pediatricians she decides to actually DO something. Oh well.

In other news.
Our car died on Mother's Day. We found out Monday that the timing belt snapped and because of the way the engine is built it basically destroyed the engine. Repair costs? over 3000 dollars. We decided not to waste the money on a car that already had 105,100 miles on it and we went out on Tuesday and went car shopping. We are the owners of a 2006 Chevy HHR and it only has 21,500 miles on it. The car payments are a bit more than we wanted but we can handle it. We are very happy with the car.
School has been going very well. I'm almost half way through the 3rd semester. It's ALOT harder than I thought it would be to do this program with 2 children. The work load is alot more strenuous and there just doesn't seem to be enough hours in the day. I'm really hoping to maintain the 4.0 for the semester but we'll see. My diet on the other hand hasn't been going very well. I've been stressed out over school and what not and just have not been adhering to proper eating habits. The scales showed it. I'm back on track today but I'm also expecting that wonderful monthly visitor at some point in the next few days so I'm not expecting the scales to be very kind for the next week or so either.
River is doing SO MUCH BETTER. We still have our issues every so often and he's still very opinionated, demanding, and tiring but he's doing alot better. He gets his temper under control alot more. We have to tell him NO or STOP alot less. He is doing much better with articulating his words and it's making it much easier to understand him. Now that it's sunny and warm most days we have the boys outside ALOT and that's helping him mellow out as well I think. He starts school August 24th, we are SO ready.

Oh and just incase you are curious as to what his shirt says it says "I run on Super Power" LOL
Cheli On Wednesday, May 13, 2009
Took little man to the doctor today for a recheck of his ears. They look GREAT. THANK GOD.
He'll be 15 months old in 2 days so we went ahead and got weight and height on him even though it wasn't his 15 month appt just yet. He is 23 lbs even ( with a onesie and a diaper on so probably like 22 lbs 13 oz or something) and 29.5 inches. Which means he's at 23rd percentile for weight and 6th for height. (wooooot still on the charts.. although height might not be accurate as he was fidgeting.. he'll get re measured next week). So his weight has slowed way down (he dropped 10% on the charts from 12 mon to 15 mon visits) and his height is tracking along at the same rate. On the adjusted charts for NS he's in the 50th :) WOO HOO.

He will go back next week for whatever shots we decide to get.

River is 42 inches and 40 lbs right now LOL.. off the top of the charts for height and at the top for weight.
Cheli On Monday, May 4, 2009
WOW has it really been 2 1/2 weeks since I last posted.. what a slacker I am. LOL Not that it matters, no reads this anyway I thnk.
I got on the scale this morning. Not that that's anything new. But the number on the scale was something I don't ever remember seeing I was THRILLED. So of course.. I got a picture. I'm going to move my scale picture day from Thursdays to Satrudays I think. Thursdays are one of the days that I have to get up early for school and I don't want to have to remember the picture and all that morning so Saturdays it is.. anyway..


I can not tell you the last time I weighed in the 150s. I'm SO excited. Mostly because I have 1.3 lbs to go before I am OUT of the OBESE catagory. YAY!!!!!
I started the 3rd semester of school last week. Boy oh boy did I get used to not having to study or do anything school related. I have 4 classes this time. Communications, Transitional Nursing, Chemistry, and Sociology. And All but the Communications comes with a crap load of homework. UGHHH Did I mention that getting homework done with a 3 year old and a 15 month old is close to impossible? I've been spending alot of time over at my friend Cindy's house. She doesn't have any kids just a couple of yorkies so it's nice an quiet over there. So far it seems to be working as I have a 4.0 average. My goal is to keep it through this semester.
River has been doing well. He is doing therapy for the sensory integration issue twice a week. They say he's doing great. I've noticed a SLIGHT improvement in his behavior recently. But maybe it's because I WANT to notice a difference in his behavior. I don't know. We enrolled him in preschool and he'll start in mid August or so going 8am to 2pm Mon-Fri. It will be GREAT for him. It will be GREAT for us. It will be GREAT for Journey. I'm excited for him. He does so much better with a stricter schedule and the school will provide him with that. Just 3 more months! He is getting so tall it's scary. We're in the process of buying winter clothes for this coming winter and we're having to buy 4T pants and 4 or 5T shirts. River Just turned 3 back in February. He's such a big boy :)


Journey finally started therapy through Early Intervention 2 weeks ago. His therapist comes to our house once a week for an hour for now. She's both his feeding and speech therapist but the more I watch him the more I don't think he needs the therapy for feeding quite so much anymore. He still has issues with liquids but I'm not really sure there is anything she can do for that. The feeding itself seems to be doing much better. The speech on the other hand.. leaves a lot to be desired. He says NOTHING. He will occasionally babble dadada or bababa but he doesn't put meaning to them and he doesn't say them during the right times so not one word. We are working on teaching him sign. We're working on "More" he's not impressed. His weight is doing good but his height still seems to be at a stand still. We went today to the pediatrician because he's been sick all weekend. He has yet another ear infection. So we have no been referred to an ENT. I got her to refer us back to the same ENT that did his tongue clipping back in December becausae I liked him. I'd rather drive down to Neumours downtown then use the ENT at the nemour outpatient clinic here in my city. I'm sure with the family history of ear infections and Journey's Noonan Syndrome (chronic ear infections are common due to the positioning of the ears) they will want to put tubes in his ears. We go back May 18th for his 15 month well check.
Doug's business has been doing well. We're starting to get repeat clients back which is GREAT and the clients are telling their friends and co-workers so hopefully we'll start getting even more with out having to do much advertising. It's great having the flexibility of being able to do schedule or not schedule as the need arrises. This is working well for us with the crazy hectic schedule we have right now.

Cheli On Monday, April 20, 2009
Meant to type this a few days ago and forgot... oops

We went to see Yanni's Voices Tour here in Jacksonville with a couple friends of mine. It was a spectacular show as we knew it would be (how could it not with someone with so much talent playing). My friend Cindy and I spent ALL day today getting "dolled" up. For those of you who don't know me. I DON'T wear make up. EVER. The last time I got dressed up and wore make up was when I graduated from the PN program back in 07. So tonight was yet another way I've decided to change. I'm going to start wearing make up more often. So we of course took a couple of pictures before the concert and I wanted to share. These will serve as an updated "me" picture. I'm approximately 162 lbs right now....


And here is one of me at my heaviest.. and actually from the last time I wore make up too LOL


Cheli On Wednesday, April 15, 2009
Well that last 2 weeks have been insanely busy for us. River went last tuesday and was evaluated at a Sensory Integration Clinic. He has Sensory Integration Disorder/ Sensory Processing Disorder. He is pretty far behind in some areas due to this condition and as such will be recieving OT and ST through the clinic twice a week (Tuesday and Thursday) for coping skills and to help him developmentally. This about a boy who didn't qualify for Early Steps because he was advanced. LOL. We took the boys sometime a few weeks ago (March 31st I think) to get their pictures done.. I'll post some of our favorites at the bottom of this post.

Yesterday Journey went to the GI doc for another follow up. The doctor doesn't think his symptoms are conducive of his original diagnosis of GERD but he DOES feel they are very in sync with Noonan Syndrome. Surprise Surprise. He said that he's so sure that he's over the GERD issues that he's comfortable taking him off of Zegrid for the time being and seeing how he does with that. He asked if Journey had been evaluated through Early Steps yet and I told him yes and about how he will be recieving feeding and speech therapy starting next week once a week in our home. He said in his opinion he felt that Journey could benefit from more than just once a week and urged us to get a 2nd opinion. He also said he felt that he could benefit from some PT as well. Told us to ask our pediatrician for a referral. He is now 23 lbs even and 28.6 inches. He has officially fallen off the growth chart for height. In fact even on the adjusted charts for Noonan Kids he is only in the 25th percentile for height. But at least he's on that chart. Weight wise.. we're thrilled. Guess that's what happens when you drink 30 oz of milk a day.
So then today we took Journey to the pediatrician because he's had some ROUGH ROUGH nights the last 3 nights. Up every hour from 10pm until 3am tossing and turning through out the night etc. Well he has the start of an ear infection in his right ear but his left ear looks good. So she gave us an antibiotic. BLAH. Then she chewed me out because his shots aren't up to date. BLAH BLAH. I asked her for the referral to the evaluation center for a 2nd opinion and she wouldn't give it to us. *sigh* Said we need to either get it from the GI doc or we need to get the GI doc to fax them a letter stating that he wants him evaluated for more therapy sessions. Because I have time to jump through their hoops. Whatever. I think we're going to talk with Early Steps and see if they can recommend a doctor in our town who has experience with special needs kiddos because I'm becomming less and less impressed with our current dr's office.

OK so here are the pictures as promised: