Anna, Brandy, Priscilla, and Helen
Monday, December 28, 2009
Anna, Brandy, Priscilla, and Helen
Kinson walks in the door and he automatically takes off his shoes and pants....not sure why but he feels this need!
Sunday, December 6, 2009
From Dr Bruce
"I have good news....Cohen's EEG was normal. I am happy for 2 reasons....#1there was no sharp or spike waves that would indicate seizure activity. Secndly, her brain activity is not slow--which can be seen with children who have any degree of mental retardation."
PRAISE GOD!!!! I can handle all these test as long as we get results like this!! I am sorry I didnt post on Thursday when we found out but I have been on the phone fighting with First Steps and it has been soooooo frustrating. Thank goodness January is coming soon and we will be able to start Cohen in whatever therapy services we choose and let our insurance pay for it (at least for the first 25 visits).
Saturday, November 28, 2009
She was evaluated officially by First Steps at the end of Oct-- she is on a verbal level of a 3month old and on the physical level of an 8-10month old. She qualified for 1x/wk Special Instruction and 2x/month Speech Therapy for oral motor to assist with controling her tongue. Like I said that was October and here it is Dec on Tuesday and we haven't begun her therapy yet---this has been very FRUSTRATING to say the least.
We saw a Neurologist at Batson on Wednesday and she was TERRIFIC!!! We can not express how truly blessed we are to have found such great drs so close! She spent a ton of time with us and sat down on the floor in the room and played and loved on Cohen, we could really tell that she cared about her and ensuring she gets proper care. The other thing that I really liked about her, is that she did not "hide" her concern. She was very upfront with me on the reality of Cohen's prognosis-- which is still undetermined at this time. She scheduled us an EEG on Wednesday at Batson to study the brain activity and rule out seizure activity. We have never seen anything resembling a seizure go on in Cohen, but she said some can be so mild that they are not detected. Also, the MRI can not show the actual connections of fibers and firing going on so this will continue to help with the diagnosis. She did say that if everything turns out normal, then she says any damage done so far is very likely reversible. Babies brains are so plyable and still forming that through therapy and time, hopefully things will catch up. She was a HUGE advocate for therapy and was very disappointed to hear that it has taken us so long to start First Steps and gave us a few alternate routes to think about to get more services.
Cohen is just stealing our hearts daily as she smiles and grins at us! She is taking a few steps everyday-- she is dying to start running after her brother-- she eats us out of house and home, she is wearing 6 months clothes, we moved up to a size 3 diaper but they are HUGE on her, we think we are going to have to go back to a size 2 for daytime when she is moving and use the 3s at night, she loves her sleep 12+hrs a night!! She loves every man that comes near her (not sure what this will mean as she gets older)!!! She is truly a little fighter!!
Here are a few latest updates:
- We celebrated Cohen's first birthday (pics to follow)! She never got to have her party because she ended up with strep throat the weekend it was planned....the story of her life :(
- They celebrated Halloween. Kinson still didnt quite get it--he kept telling people "thats enough" when they were giving him candy! This was the weekend Cohen had strep so she didnt get to partake :(
- Our favorite family from Virginia came to visit us! We miss them so much and usually only get to see them for a week during the summer, so we were so excited that they got to come down. We are planning for us to head up there in June for Stefani's graduation-- can't decide if we should drive or fly with the 2 kids???
- Cohen has had multiple dr visits and I will do a separate post to update and get my prayer warriors ready!
- Bear has been diligently studying, we couldnt be more proud of him! He has past the 2 hardest sections of the CPA test and took another part Nov 24. We will be anxiously awaiting his scores as he studies for the last part on Jan 12. He has continued to persevere through his fatigue and stress at work-- he has worked soooo hard for this!
I hope that the Holidays have brought many blessing and good times! I am hoping to get my pictures uploaded and added soon!
Saturday, October 17, 2009
As far as the results, that has been the frustrating part. We had the MRI done at UMC but our endo has a private practice therefore he has to request the results. Well we love our dr, however his office staff leaves a lot to be desired. So i called them on Monday to let them know the results were ready but they had to call and get them. They said fine, well on Wednesday they call Bear and ask if she went and her MRI they hadnt received the results yet!! He told them they had to call and get them. Friday came and we still havent heard anything, so Bear called UMC on Friday and gave them our dr's number for them to fax it to them! They arent open on Friday afternoons so we werent able to call and verify they received it. The latest we could hear anything is the 30th, we actually have an appt that day..........so we wait :(
And a new appt to add to the list--Neuro Nov 25th.
Sunday, October 4, 2009
Wednesday, September 30, 2009
I havent taken all my recent pics off my camera but i felt like if you made it through this post, you at least deserved a picture!
Sunday, September 20, 2009
Monday, September 14, 2009
To make this as understandable as possible I will leave out a lot of medical terminology and details just so you can get the big picture. I have posted multiple times about Cohen's thyroid disorder and small size ever since she was diagnosed. We went for a regular check up with her endocrinologist last week to check her thyroid levels --which were great and have been regulated since MAY!-- and developmental milestones. She has gradually been gaining weight however she has not grown in length at all in 4 months (she is 25 in long). I always say she is small due to her hypo-T, however I was corrected by the dr who explained it very well to me. Cohen DOES have hypo-T BUT she is regulated, therefore she is just like any other baby out there. That is where the concern comes in....she has been regulated now for 4.5 months and has fallen farther off the growth curve, instead of gaining or at least maintaining. This combined with the verbal/speech delays are huge concerns as she approaches her first birthday next month. Dr Bastian feels as though the hypo-T might be secondary to something bigger going on.
So here is the plan of action-- Cohen will have a sedated MRI Oct 9 (rule out obvious malformations, tumors, etc), follow up with endo Oct 21 for results, and then meet with a genetisist Oct 30 to hopefully put all these pieces together.
I do not know what any of this means, I have tried to just be positive and know that they are being cautious. But I am constantly reminding myself to be thankful, I have so much to be thankful for. I am thankful that we have drs who listen and are proactive in Cohen's care. I am thankful that there is only 1 pediatric endocrinolgist in that area and Cohen was seen within 4 weeks and there is only 1 pediatric genetisist in the whole state and Cohen got an appt next month. I am thankful for listening to my gut and being persistent with Dr Flowers that Cohen's tongue wasn't normal, thankful he listened! Thankful for how far she has come!
Monday, August 31, 2009
There are so many stories and good times to share but I need to get the little one to bed but here is a few pics (there will be many more to come). And big shocker, there are a few pics of ME!! I had a friend ask why I had no pictures of myself up and I didnt have a good answer except that Bear still doesn't know how to work our camera so when he does take a picture it is not to good. Nana took these for us :)
Saturday, August 22, 2009
until our little girl is a year old!! This year has been so long, yet gone by so fast. We weren't scheduled for a 10 month check up but Cohen was having some ear trouble so she got one anyway. She is really having problems with her right ear, that was the one that caused her to need tubes, she had one ear infection that NEVER went away. We were hoping after tubes that this would help this situation, but it has helped to drain the infected fluid out, but however too slowly. She has had 2 ear infections (or 1 that just wont go away) this month, so she is on another round of antibiotics and if doesn't help then we will get some powder from Marty's Pharmacy that they compound to "puff" in her ears to hopefully kill eaverything. If not then back to Dr Lee to decide the next step. Her ears clearing up are so important to her and us as we try to eliminate all factors that might mask as a delay. Hypothyroid kids have a tendency to have speech delays and she is already delayed in her language skills we know but we would like to eliminate the factor that it could be because of hearing difficulty, so we hope that one of these solutions will help.
- pulling up on EVERYTHING--don't stand still too long, she will pull up on your legs!!
- attempting new textures of food-- she sort of gags easily
- stealing all of Big Brother's toys
- loving bathtime, if Kinson doesn't drowned her first!
- sleeping 11+ hours a night, and she looks too cute in the morning to wake her up so we open the door and hope noises will wake her up
- attempting our 6th or 7th sippy cup....this hasn't been going so well
- wrapping herself around her Papa's finger! She didnt have to try to hard!!
Tuesday, August 11, 2009
Our little girl is on the move!! She is just continuously amzing us with her determination. She is now crawling everywhere and pulling up on everything. She looks so funny because she is the size of a 5 month old! However she is growing! We went for her 9 month check up---yes i know it was late-- but she is weighing a little over 15 lbs!! That means she has finally doubled her birth weight!!! This is especially important as she is so active and we anticipate her weight gain to slow down a bit. But she is just so darn cute, again I know I am very bias, but we really can't ger enough of her!!
Between 2 kids, the campus, and each team on different routes, I had a difficult time taking pictures, so here are a few!
Monday, August 3, 2009
Tuesday, July 21, 2009
She LOVES to eat right now, although not much from her bottle but she wants to feed herself. She loves her mum-mums and cheese crumbles. We havent tried too many table foods because I learned with Kinson, once they start eating tablefoods they hate babyfood. Well with her small size, I like to control that she eats a certain amount each day and anything over that is great. We wont get weighed again until Monday so I dont know exactly how much she weighs but at home it is between 14.5-15lbs.
Her verbalization has increased some, especially in the morning or during diaper changers. She usually has the best stories to tell us then! Still no real so called babbling but definite sounds on a regular basis now!
As far as her thyroid is going, we are still taking Synthroid each morning (this will be our routine indefinitely) and she will have bloodwork done again Monday to see if she is still within the range they would like. I know I always say how amazed we are each day as we watch her develop, but we truly are in awe of how strong she really is.
Sunday, July 5, 2009
It could cause a HUGE meltdown?! Kinson "helped" me in the kitchen the other night, I gave him the marshmellow cream after I got out what I needed and let him go to town. He is so picky i never thought he would actually taste it. After one bite he was hooked! He loved it, but it was close to bedtime so I had to cut him off and he did not like it one bit. He threw a MAJOR fit.....these seem to be getting more and more common!
If you look at her you would think that she has grown 2 sizes but the scales still dont show it. She is hanging out around 14lbs 5oz and 24-25in long. These are both in the >1% growth percentile but all we can do is encourage food whenever she wants it. She had her first surgery a couple weeks ago, she got tubes. We opted for those for 2 reasons: 1: we thought it was affecting her hearing which in turn affected her speech and 2: it affected her ability to suck on the bottle because of the pain it was causing. We have seen a great improvement in both areas. She is a trooper with her medicine, she has to take a pill, yes you read that right A PILL, each morning and can't eat for at least 30 minutes. Well that wouldnt be too bad but she has to wait the 30 min and then take her Prevacid which would like her to wait another 30 min to eat! She really does well and tries to be patient.
She really is doing so well compared to where she started! We are so thankful and encouraged by her.
The Fourth Of July is one of my all time favorite holidays and I think it has to do with where I work and knowing so many men and women who have fought for our freedom. Their stories are amazing and it is a rminder to me each day that freedom is not something we should take for granted. Thank You!!!
Sunday, June 21, 2009
She also saw the endocrinologist last week. After waiting 3 hours, we saw Dr Bastian and he was so helpful. He spent a good 45 minutes with me (now at least I knew why we waited 3 hours) explaining all her tests and examining her. He did show concern in her small size (14lbs 2 oz, 24.5in long) but also said at this time there isn't too much we can do. He was thrilled to see her TSH (thyroid stimulating hormone) level was within normal range, 1.4. She started at 8.9! He still has further testing to do to determine the specific type of hypoT she has but definitely leaning towards autoimmune hypoT. This is mostly due to my history with autoimmune disorders and my new diagnosis of hypoT. She goes back in July to continue with her testing and developmental evaluations.
What is Cohen doing these days besides being a Bathing Beauty?
- sleeping from 7:30-6! (she might fuss around 2 for her paci, but otherwise we cant complain)
- sitting up for hours it seems like
- spinning in circles on her tummy
- finally eating 1 jar of babyfood at one sitting
- she LOVES mum-mums and puffs
- makes a mess with a regular cup
- attempting a sippy cup
- LOVES her papa, she reaches for him no matter who is holding her
- she started Big Girl school with Kinson and the first week got SPOILED ROTTEN, we had to talk to them about that!
She really has come a long way in a short period of time. We couldn't be more thankful for all of the support that we have had. We just look at her and are amazed!