Nutrition appointment yesterday

I finally finished with the course I was taking but still have to take the final. Needless to say I've been taking it easy the past few days...I really just needed a break.

But we did see the nutritionist and OT yesterday. This is really the scale I go off of because she is completely naked and accurate everytime. Are you ready....she officially weighs 22lbs 2ozs! That is a 1lbs 2ozs weight gain in 2 months! Her height was 33.1 cms which is a 3 cm gain in two months. This puts her just below the 10th percentile for weight and 25th percentile for height. It's so nice to have my baby higher on the charts finally. :)

Thats about it going on here. We spent a nice relaxing day at home. Arianna fell asleep at 5:45pm and woke up about 9pm ready to play. *sigh* Looks like she'll be up for awhile. Oh well...good thing she can sleep in since tomorrow brings another relaxing day. Daddy on the other hand has to be up at 4am for work so I better go spend a few minutes with him before he's off to bed.

Fun in the bathroom!

I couldn't decide which picture to post so I decided to make a quick montage. She sure was having a blast in the bathroom tonight!

Make photo slide shows at www.OneTrueMedia.com

I have a little helper on my hands lately. I pulled the chair up to the sink when I was washing Arianna's cups tonight and after I rinsed them she would stack them properly in the drain board. I will definintly start having her help me more in the kitchen. :)

She really enjoys helping me cook too which is alot of fun. Now if I could only get her to eat more. She really has been stressed out lately by her poor eating. She is already a little peanut I don't need her losing any weight now. I'm not very creative with cooking so if you have any suggestions please let me know. At least she was 21 pounds last week so it's not like she is extremely small. As a mother I just want to feed my child and it's so frustrating when she doesn't want to eat. I feel like it's my fault when I know its not. At least she likes ice cream...it's been the only thing putting the weight on her!

Well I better get a few things done before bed. Good night!

Yesterday we had the occupationl therapist and nutritionist over for a visit. The night before Arianna went to bed at 1am because she had a late nap, so I actually had to wake her up for this appointment and she wasn't happy. She did play with the OT, instead she just cried and sat on my lap. The nutritionist did get her measurements and she is weighing in at 21 pounds without any clothes or diaper!!! She is 81 cm in length and her head is growing well too....I can never keep up with that one.

Then we had the speech therapist come over and man was she impressed. I really need to get some video of her talking. It's just blowing us away at home much she is saying. I even bought her some of those alphabet letters for the bathtub and this morning I was holding up the letters pronouncing each one and she was saying them too. Of course, only a few but it's still amazing to me!

Then today we took her to the hospital for her follow up renal (kidney) ultrasound. For those who don't know...Arianna was born with both her kidneys (it's common for 22q kids to only have one kidney) but she had hydronephrosis of her left kidney. At our last ultrasound back in Sept. 07' this was resolved but the urologist wanted to wait and year and double check to make sure things are still looking good. The lady who did the ultrasound said everything looked good so that was reassuring. For once, I'm not worried about the test results but I'll still be picking up her results for my own records. I can't tell you how helpful our medical record book has been. She has seen so many doctors and when we see one of our specialists and they ask about a certain procedure, blood test, etc. I just whip out the ol' book and there is the answers. :) We go next month to see the urologist and hopefully that will be the last time we see him.

The rest of the week should be nice and relaxing with the exception of my doctor's appointment tomorrow. We might even have a fellow heart mom come over sometime this week to hang out. Her baby is 4 months old and also had tetralogy so it will be nice to get together and talk. I'm so curious how Arianna will do around a baby. I'll make sure to post some pictures.

21 Party!

We were so excited to hear our church was celebrating some birthdays and anniversaries at church last night so we decided to go and let Arianna eat some cake to celebrate her big 2-1 (notice we skipped the 2-0!) I was totally bummed because as soon as we got to church I overheard someone ask the pastor how she was feeling....then heard something about coughing and flu and I was ready to leave. We decided to try and stay through praise and worship but as soon as the pastor started talking she announced she was dealing with a respiratory illness, then the gentleman who was sitting by her keep blowing his nose, and the lady in front of us is the pastors in-laws and she started coughing so we packed up and left. Besides there was tons of people there because of the birthday and anniversary party and ALL the kids were in the sanctuary which meant they would end up in the cry room and we can't have that. So....we decided to take Arianna to Sonic and have an ice cream!!!

Enjoying her yummy vanilla ice cream

This is exactly how I gained all my weight!

I forgot to tell you all that because of this wonderful weight gain Arianna is FINALLY on the charts at the 5th percentile for weight! She is at the 10-25 percentile for her height. As you can tell I am extremely excited about this. She looks so healthy and finally filling out. No rolls or anything but she fills out her size 3 diapers alot better.

With all this exciting news about her weight gain she has slowed way down on her eating because she is getting more teeth. I can't wait till all these teeth are out. I have been really good about taking the paci away from her during the day even though she signs for it all the time. I try to only give it to her during naps and in the car but since her teeth have been bothering her I let her keep it today while we went to the grocery store. I have to say that was the first time she stayed in the cart the entire time. Normally by the time we get to the check out she is crying to get out. I am planning on getting really strick with the paci rules when she turns 2 but in the meantime I'll let her have it if it helps.

Nutrition appointment yesterday

She actually let me put this head band on her. It's been a challange keeping it on though!

We finally got approved for 4 more session with the nutritionist. Last time she was here was March 11th, so it's been almost 3 months since our visit. Arianna weighs 19 pounds 6 ozs, which is just 2 ozs shy of gaining and entire pound in 3 months. So as you can see she gains very slowly. I was really hoping she'd hit the big 20 but looks like we'll have to wait a few more months. Arianna did grow 3 1/2 cm's in length and is at 30 inches tall! Her head circumference is 45 cm's and I'm not sure if thats good or not. Her melon looks good to me! :)

The nutritionist was very pleased with her progress and acted like she didn't need to come back. This lady is always this way but I just keep pushing her to come back. Since we have only 4 sessions left I think it would be a good idea to see her every 2 months. Plus it gives Arianna some time to pack on the weight. So hopefully we'll be having the big 20 party in August!!!

Chunky Monkey

This morning we met with the dietician, occupational therapist, and feeding specialist. We have met once before with the feeding specialist who seems to be a very educated and helpful lady. I told her all about our past few weeks and she asked tons of questions. She too feels I should seek another pediatrician, which made me feel better to think I wasn’t just overreacting.

Arianna weighed in today at 18 pounds 4 ounces, which is a weight gain of 1 pound 4 ounces in 1 month. They were all very pleased and shocked at the increase in weight. We did some feeding time with Arianna to show them how well she was eating and they were just in awe at how much she ate. The OT and dietician are going to write a letter to the pediatrician and GI doc explaining to them that the eating has been a significant problem and ever since putting Arianna on the oxygen it has helped dramatically with this. I feel like these women are really trying to help me advocate for Arianna. To be honest with you they seem like the only ones that think this is a big deal.

I have put a call into the peds office to schedule a consult visit with a different doctor. I’m hoping this doctor will be more involved in Arianna’s care and not push things off like our current one does. I am so upset right now and irritated with the care of our current ped I was in tears just talking about it today.

Oh yeah, then to top it off I get an email from our cardiologist telling me he is not scheduled at the clinic on the 20th, which is the day we are scheduled to see him. I called to reschedule for the 27th and they are totally booked. I am waiting on a call back from the cardiology nurse to explain my situation and see if there is anyway they can fit us in. I do not feel comfortable having any other doctor see Arianna with all that is going on.

So today I am completely irritated with the medical profession and really wanting some answers. I have taken Arianna off oxygen at different times today to get an idea of how she does off oxygen and her sats are running at the same numbers they were when we first got this darn pulse ox 3 weeks ago. So what does this tell me….NOTHING!!! We still don’t know why she would be low to begin with. No one has answer and I’m getting more irritated as the day goes by. I just can not stand this darn oxygen on her anymore. She is walking all over the place, or should I say trying to walk but constantly tripping over some kind of cord. I really pray this doesn’t turn into a permanent thing. I know a lot of people have it a lot harder. I should be happy at least we didn’t get the feeding tube but I’m just in that kind of mood today that everything seems to be bothering me. Thanks for listening to me vent and hopefully my next post won’t be so down.