Started a Facebook Account

Hi All:
Since it was hard to communicate on this blog, Heather opened a Facebook account for us. Just go to facebook.com and search for Tetrasomy Sipes. If you would like to get the login information, please feel free to email me at grilla4915@hotmail.com.

Hi Everyone!!

I just wanted to welcome any new blog member and say hello to the rest. I would love for all of us to try to be more involved and keep this blog more active, if possible. The blog here seems a bit complicated for new comments to be seen, since they stay back, when the post was originally made. Hope that makes sense :) I will post the results of Esteban's recent appointments in the January thread, but unless you click on the January tab, and click on results of recent appointments, you wont see it.

Anyway, hope all of you and your families are all doing well. Stay in touch and lets share more of our experiences, so we can all learn from each other and support each other. Talk to you all soon :)

Jake

Hi Heather, Dawn and Luisa, we have a 3 1/2 year old, Jake, who has also been diagnosed, at 18 months(though it took 12 months and 4 different paediatricians until one listened to my concerns).
Birth weight: 3.060kg (6lb 12oz)
Weight age 3: 12kg
Jake has experienced:Slow growth: height and weight at 3rd percentile
Global developmental delay: sat up 10 months, crawled 14 months, walked around 20 months also has problems with fine motor skillsLow muscle tone affecting gross motor and feet problems
Hearing: some hearing loss more problem with low tones and so far 2 sets of grommets to help with fluid buildup in ears (our first perfect hearing test was achieved one week before his 3rd birthday).
Currently has vocabulary of roughly 15 single words.As he is about to begin kindy in a few months our biggest concern at the moment is the huge delay in his speech and communication. Although he understands everything you ask or tell him he has trouble communicating his needs.I also find that socially in situations with children he does not know he is quite happy to play by himself or just sit and watch the other children playing (might have just a little to do with bossy big brother??).Look forward to sharing the highs (and lows) with you all. Jake is currently the only person in Australia who has been diagnosed

Culllen

Heather, Thank you for starting this! My name is Dawn and my son, Cullen, was diagnosed with Tetrasomy 9p at 6 months of age.

Age: 1 year

First Diagnosed: 6 months

Birth weight: 5lbs 4oz

Current weight: 28 lbs

Anomalies:

* Sacral dimple with low-normal conus medullaris

* Single palmar crease

* Low tone hearing loss (may be related to excess ear fluid)

* Large fontanel* Very slow growth - in 3rd percentile

* Psedoarthrosis of the right clavical (collar bone formed in 2 pieces)

* Delayed gross motor skills

* Sat up at 8 months

* Mild left pelvicaliectasis

* Under ossification of pubic bonesMuch of this sounds far worse that it really is. Most of his conditions are what doctors call "variations of normal". In other words, everyone has some deviation of normal. Like Heather, I look forward to meeting all of you!
January 13, 2009 6:43 PM

Questions, concerns, and feelings!!

Having Hallie has truly been a blessing for my husband Jerry and I. She is so amazing!! She has such a sweet demeanor about her. She is always out to please us! She does have the "typical" toddler attitude! She gets upset when she doesn't get what she wants or when she is punished for doing something she isn't supposed to! But shes an angel! My big concerns are for the future~ will she lead a "normal" life? Will she do good in school and keep up with her classmates? Will she fall in love and be able to have a family? These things really scare me as time goes on but we have given it all to God and know he has a plan for her. She has a surgery coming up this fall to have her heart fixed, I'm really nervous about that, I think its normal! Well those are the feelings for the day!

Esteban

Esteban








I am so happy and excited that this blog exists. Thank you for starting this! My name is Luisa, I am 24 years old and my son Esteban was diagnosed with Tetrasomy 9p, when I was 23 weeks pregnant.
Age: 8 Months
First Diagnosed: 6 months
Birth weight: 6lbs 11oz
Current weight: 16.5 lbs
Anomalies: * Mild Dialation of his heart's Aortic Root
* Single palmar crease
* Large fontanel
* Slow growth - 5th percentile in weight & 25th in height.
* Rolled Over at 3.5 months.
* Sat up at 8 months
* Started saying "mamama and papapa" at 8 months(1 week ago) From the moment he was born he has been a very calm and happy baby. He enjoys playing with his toys, hugging his cousins, and being held by mommie at all times :) I look forward to sharing all my experiences and stories with all of you!!!

Results of Recent Appointments:

Please share any pertinent information!