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#241 of 735 Old 04-15-2006, 12:20 PM
 
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my son is three months old. He was born with a congenital heart disease called Tetralogy of Fallot. He also has partial trisomy 3p translocation to the bottom of his x chromosome (28q) i dont know if i really said that right but basically a part of his chrom.3 is duplicated and appears at the bottom of his x chrom. I was tested for it and did not have it. They did not test my husband because it is on the x chrm. so as far as we know it is just something that happened randomly. We are pretty shaken by eveything. He will have open heart surgery to repair the ToF, and it is a 'wait and see" deal on the partial trisomy 3p. if anyone knows anything about this please let me know....
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#242 of 735 Old 04-17-2006, 12:46 AM
 
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I just recently joined this board and I am so glad that I found it! I have a wonderful 18 year old daughter whom I adopted when she was 2 years old. She has FAS, ADHD, MMI, OCD, and an anxiety disorder. I've raised her on my own (hubby left 3 weeks after she came to live with us) She is the light in my life!
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#243 of 735 Old 04-17-2006, 02:47 PM
 
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This is my DD#3's dx. Right now she is exclusively bf'g and all her systems work correctly. We only know something is wrong with her brain from her MRI/CTs. She is on Inderol for past SVTs and is being weaned off her phenobarbitol (her last seizure was at 3 days when she came off the cooling cap). She is now 5 weeks old and such a sweetheart.

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#244 of 735 Old 04-17-2006, 03:03 PM
 
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Okay, well I'm going to post for my mother. My brother is 22 and has post encephilitis (hope I spelled it right) mental retardation and is physically disabled also, both as a reult of improper emergency and ongoing treatment. He still suffers from seizures occasionally and has to take daily meds. My mom has been caring for him alone since it happened (when he was 3 yo.) and my parents seperated. I have alot of respect for my mother for holding on to herself through it all. Go mom!
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#245 of 735 Old 04-21-2006, 05:28 PM
 
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my son has been recntly diagnosed with mps type 2, hunter syndrome. it's still all new and overwhelming, but i'm adjusting. it's a rare genetic disorder and he's the only person in bc with it (about 20 people in canada have it i have been told), so we're experiencing great support cause the community is so small, but also difficulty in figuring out how to get him treatment once it gets approved. anyways, i wish none of this had to happen to our babies, but i am sure glad there are other mamas and parents out there who know what we're going through. thanks.
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#246 of 735 Old 05-04-2006, 02:22 PM
 
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I'm new to this board, but it's so nice to have found you all! I'm SAHM to two boys, Shai (4 yrs) and Akiva (almost 8 mo). Shai has severe hemophilia, which is a bleeding disorder that is pretty manageable with infusions of the appropriate clotting protein. With his regular regimen, he tends to have the odd bleed into a knee, is permanently a patchwork of bruises, but he can do all of the ridiculous things that boys seem to need to do.

We're just now hitting a smooth patch with him after some immunological issues that complicated, well, everything - growth, clotting, you name it. He is also anaphylactically allergic to a nice long list of things, and moderately allergic to a slightly longer list of things. (Anyone know a good complementary medicine person in MA?) Currently, not doing any kind of physical therapy - yay! Finally graduated from having home nursing care...I am mama, see me poke small people with needles. Oh, well.

Akiva is still b'fing, which is great because he's allergic to dairy and egg (who knew I'd become a vegan?), and has eczema that keeps him from sleeping at night. It's a pretty minor thing in the grand scheme, but the poor baby wakes up wailing and scratching every couple of hours. He looks like someone shoved his face in sandpaper, poor thing.

So, allergies and clotting - that's us. Anyone got good ideas about eczema care?

-Ziva, delighted SAHM to two boychiks and about to celebrate 10 years married to my best friend.
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#247 of 735 Old 05-04-2006, 05:58 PM - Thread Starter
 
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I don't know how severe of eczema it could treat but my sister has been using some stuff from www.sudzndudz.com with lots of success with her baby. She's allergic to milk and has bad outbreaks when mama gets ANY milk.
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#248 of 735 Old 05-05-2006, 08:47 AM
 
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Last week my son saw a geneticist, and got a diagnosis of Rubinstein Taybi syndrome. It's kind of a relief, because it explains the heart defect, reflux, developmental delays and feeding issues, and that they're all related to one thing. But it's hard to hear and accept that he's never going to "catch up" but will always be delayed, and have some degree of mental retardation. Some health problems are an increased risk--ear infections, cavities, bone fractures, even leukemia and lymphoma.
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#249 of 735 Old 05-07-2006, 09:36 PM
 
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My son Zach is autistic (moderate to severe) with very delayed language, and he has recently been diagnosed with epilepsy. Zach is 6 years old and is just finishing his third year in early childhood special education. We have an IEP coming up to determine placement for next year. Zach is loving, but has a lot of difficulty with new situations and is prone to tantrums when stressed. He is also hyperactive and can be annoying, but what kid doesn't have their moments- Zach just tends to fixate at times and is difficult to redirect. My youngest daughter Elle has a mild expressive speech delay and will be receiving speech at home to help her catch up. My oldest dd and younger son are on target at this time, although my son did have a speech delay at one time. I am looking forward to getting to know everyone!
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#250 of 735 Old 05-07-2006, 10:24 PM
 
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I have 6 children and my youngest boy was born alcohol/crack addicted. We got him when he was 7 weeks old, still going through withdrawals. He is now 7 years old and has been diagnosed with ADHD, ODD and Bi-Polar and has asthma. He is on meds that work for some of the time, but with the ODD there is nothing they can do about that, counseling and being able to control his temper.
My oldest son is 10 years old, we got him when he was 2 years old. He was born Fetal Alcohol Syndrome (just like my youngest son). He is ADD and is currently not on any meds. But he suffers in school. He has severe asthma and migraines. He has comprehension problems due to the FAS.
My daughter who is 6 years old has no tailbone, which makes her have no nerve endings which causes bowel and bladder inconsistancy. She is still in pull ups because she has no control. She just had major surgery were they reconstructed her bladder, it was the size of a new borns, and they reconstructed her bowels by using her appendix. She will be using portable cathetars, one through the belly button for her bowels and the other one just below her belly button for her bladder.
My 7 year old girl came to us with Attachment disorder. We got her at 7 months old and it took us a year in order to be able to show her any kind of love that she would be willing to accept. She is a lot better now, but she still can't stand to be center of attention and she doesn't know how to accept affection.
My other 2 daughters, one is 5 the other is 2, they are bio-sibs. They were born crack addicted but so far they are just fine. The only thing wrong with my baby is that she has asthma. Praise the Lord she doesn't have Hep C, her birth father just died last year from it and her birth mother had it while she was pregnant, but she is clear of everything
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#251 of 735 Old 05-07-2006, 10:37 PM
 
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I have a 14 year old with attachment disorder and ADHD. Issues with bullying and anger have been cropping up recently.
My daughter is 9 years this month. She is dx with SID and possible OCD. She is doing amazing- most people would not know she has a diagnosis.
My almost 7 year old son has some issues cropping up. I hope we aren't facing an ED diagnosis... but we have to wait and see.
My 19 month old is thriving- another son.
(I also have 5 stepkids, some who have learning disabilities).
I'm dx with OCD and ADHD- so how much of my kids' issues is genetic, circumstance (father's death) or just chance??

Punk, hippy, mama to 4 amazing kiddos, Boy#1 (18), TheGirl (13), Boy#2 (11- PBD) and Boy#3 (6)
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#252 of 735 Old 05-09-2006, 09:17 PM
 
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Quote:
Originally Posted by my~hearts~light
I don't know how severe of eczema it could treat but my sister has been using some stuff from www.sudzndudz.com with lots of success with her baby. She's allergic to milk and has bad outbreaks when mama gets ANY milk.
Thanks for the tip! We're currently trying eczema cure no. 217 (saltwater baths), but it's always good to have something else to try... Soap is tricky with eczema, since it does dry out the skin, making a bad situation worse.

-Ziva, mama to two boys (one of whom is bf'ing right now!), loving one man and trying to keep a fish alive...
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#253 of 735 Old 05-14-2006, 03:10 AM
 
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new to board-- i have a 12 yo son with ds. if ya'll have any questions- i'd be happy to reply.

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#254 of 735 Old 05-22-2006, 12:40 AM
 
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I just joined, after months of reading post. I have 4 special needs children.
Mariah is 14 (15 in June), she is mildly mentally retarded, has CP, seizures,
Brandon is 13, he has Aspergers, ADHD, ODD, asthma,
Jessica is 12 and was a 26 weeker, she had ADD, and ROP
Ashleigh is 6 and has Polymicrogyria, seizures, CP, ADHD, is on oxygen, has feeding issues, sensory issues, severe allergies,
These 4 were adopted. I also have 4 adult children,
Thanks for such a wonderful supportive place. I have learned soooo much here.
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#255 of 735 Old 05-22-2006, 06:55 PM
 
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I'm new to this board! My 3 year old was diagnosed with an autism spectrum disorder a couple of months ago (our diagnostician is leaning towards a PDD-NOS label)....and after a geneticist appt. a couple of weeks ago, we are also possibly dealing with CP which could be related to a birth injury. We also recently found out that he's got some food allergies.

I look forward to getting to know you all!
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#256 of 735 Old 05-22-2006, 11:44 PM
 
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I am new to the boards too, but have been lurking and reading for a bit now

My dd is almost 7 and has Canavan disease. It is a neurologic degenerative white matter disease, a leukodystrophy. She is in a wheelchair, has a gtube and has almost no voluntary movement. She has a great sense of humor though, and an awsome smile

Proud mom of three!  Special needs teen princess wheelchair.gif , 7 year old happy girl modifiedartist.gif , and my flower toddlerhearts.gif

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#257 of 735 Old 05-25-2006, 08:11 AM
 
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I noticed a few people have posted several diagnoses of rare chromosome disorders recently, so I wanted to pass this link on.

http://www.chromodisorder.org/

It's called the Chromosome Deletion Outreach Inc., but they deal with all kinds of disorders... translocation, trisomy and deletion.

Hopefully this might help some people touch base with parents, friends and family of people with the same or similar disorders.

Mama to Dashiell (July '05) and Matilda (March '08)
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#258 of 735 Old 05-26-2006, 01:35 AM
 
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I think this is so wonderful! A site that I can go too. If I could just stop crying long enough to read all of it. My son is 15 months and we dont know what is wrong with him. His weight is 17 lbs and he has been in size 3 to 6 month clothes for the last 8 months. He has no large moter skills. He eats about 1000 calories a day. We have had the sweat test and many more all have come back neg. I would just love an answer so that my husband and I could help him. Its breaking my heart! Thanks for setting this up! You have truly put a smile on my face tonight know I can come here with support. Thanks Kim
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#259 of 735 Old 05-29-2006, 01:57 PM
 
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Hi. I'm Lisa. I've been a wahm as an independent consultant for some companies previously for Natural Family Boutique, Avon, and still selling Kat's Coffees & More. However, my full time job is my son, Luc.

My son Luc who is 2.5 years old was dx with possible PDD and at-risk of autism. I have been having a very hard time believing this is happening to us. I had a normal pregnancy. However, I induced a few days after his actual due date, had the epidural, and post-partum the placenta had split into two, causing me to hemmorrhage. I had to take 3 months of iron pills to eliminate anemia.

We met with his Pediatrician at 18 months, childhood specialist at 2 years and again 2 months later, then AZ Early Intervention twice, child psych, and Div of Developmental Disabilities. His next step is to meet with another child psych as a second opinion. Then in a couple of weeks, scheduling of evaluations and then therapies on speech, OT, etc. :

Anyway, hope to overcome the overwhelming fact and to learn more on how to help Luc as much as possible.
Thanks!
Lisa
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#260 of 735 Old 05-29-2006, 02:05 PM
 
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Quote:
Originally Posted by hemo-mommy
Thanks for the tip! We're currently trying eczema cure no. 217 (saltwater baths), but it's always good to have something else to try... Soap is tricky with eczema, since it does dry out the skin, making a bad situation worse.

-Ziva, mama to two boys (one of whom is bf'ing right now!), loving one man and trying to keep a fish alive...
My son Luc has ezcema. We use Aveeno Hair & Body Wash or the Lavendar/Vanilla Wash for bathing. We also use Cetaphil Lotion (typically costs $11.99 per 16 oz pump) or the generic brand, Equate (sold at Walmart for $3.99 per 16oz pump) or Walgreens Brand (was on sale 2 for $5.99). Either case it's the same formula as Cetaphil and the only kind he can use. Eucerin Aquaphor is to greasy..like sticky lard on his skin. Lubriderm has lanolin which is an allergen.

Other allergens include Parabens, mineral oil, etc. I've tried them all including Mustela, J&J, Baby Magic, Gerber, Huggies, etc...none of them works. However, there if you're kid is gluten free (so I heard that Oatmeal is gluten) therefore, California Kids has one that is allergy free.

Or all in all...DOVE is the best.
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#261 of 735 Old 05-29-2006, 02:14 PM
 
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My son is 9 and has been diagnosed with asperger syndrome, bipolar and adhd. The bipolar diagnosis is fairly recent, and we aren't sure at this time if the bipolar presented as aspergers when he was younger or if he actually has AS as well.. we are in the process of getting him re evaluated now.

He takes Abilify for anxiety and we just started him on Concerta to try to calm the daily rages. We started meds at 7 years when the constant rages were interfering with his every day life.

He is allergic/extremely sensitive to dairy products and we have him on a strict casein free diet.
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#262 of 735 Old 06-08-2006, 07:04 PM
 
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My son Sebastian has been diagnosed with Systemic Juvenile Idiopathic Arthritis with Macrophage Activation Syndrome. He was also malnourished by the time he was hospitalized and diagnosed (I think because he was too sick to nurse effectively, and has never eaten solids.) He is now fed via an ng tube. He is 12 months old. He is on corticosteroids that we hoped would have put him into remission by now, but that hasn't happened. He is in a lot of pain in the mornings and at night. He has lost most of his large motor skills. We are continuing with treatment, and also exploring alternative treatments. We've had success with Traditional Chinese Medicine - he always feels better the day after a treatment. He is the cutest little guy! I also have two other sons, aged 4 and 6.

This is a rare diagnosis for someone so young. I'd be interested to find someone else who has dealt with this disorder.
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#263 of 735 Old 06-11-2006, 03:58 AM
 
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I am a mother of three. My first child is about as normal as we have. Her name is Lily and she is 6 years. My Second child is deaf in his left ear. His name is Ethan and he is 4 Years. My third child has the most of all. He has 3 diagnosis. 1st is Hemangiomas. His are not as bad as you see on the web sites with the face being deformed from them. His on the other had, grew on the inside of his body to by age 3months, block off his airway. He was treached when he was 1 1/2 months old. At about the age of 6 months, he was noted to have right sided subclavian arch with an extra arortic valuve. That bunch of mumbo did not mean much until the tested him and found him to have a 22Q11 deletion. DeGorge is a nother name for that deletion. Then shortly after that he was found to have high blood pressure. He is now 2 1/2 years old and they still don't know why he has high blood pressure because he is not growing so the same blood vessels they saw before are not much bigger so they can't see more. He was just givin the title of PHASES. Just a word for the DRs I was told. He is a lovely boy with energy and attitude. With the excepiton of the trech(which encludes speech delays), his short stature, and some reddness on his face, he is normal. It is late and I would love to chat with some other moms so I hope to talk later.
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#264 of 735 Old 06-14-2006, 09:31 AM
 
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My daughter was diagnosed with Autism at 26 months. She met most of her milestones on time but I did notice she wasn't babbling like other babies around 10 months. She started speaking and had 5 words at 12 months but soon after 13 months she had no language and fell completley silent. I brought it up to our family doctor at her 15 month visit and she said I was just a worrywart and that my daughter was developing appropriatley. At her 18 month visit I brought it up again and was yet again told I was just being a worry wart but if she wasn't speaking by 20 months she would get an evaluation. I waited a few weeks and called back.
A woman from a state program came and evaluated her. I asked her after if she thought it was Autism and she said she really didn't think so but she had enough red flags to be seen by a team. So we brought her and they said she had many red flags for Autism and this qualified her for therapy. It was very difficult finding her a place and she only could get 6 hours total over the summer. It broke my heart that we couldn't get her more. I had to call around to get a clinic to officially diagnose her and most places told me 8 months to a year for a waiting list. That wasnt good enough for me. I was able to find a place that could take her in 4 months and within one hour we were given the diagnosis of Autism. We knew it was Autism but actually hearing a doctor say it is still a shock and heartwrenching.
I took about 1 night to mourn and feel bad for her/myself and just dug right in to finding her the best I could for our rural area. I was able to find a program that is 5 days a week, 6 hours a day of therapy, ABA, DT, OT and speech. She is making great strides, makes good eye contact, is starting to show more interest in her peers and has even started to say a word here and there. She communicates her needs and wants through signs and a communication book (PECS) and I am so proud of her. She picks up new skills swiftly and she is definitley one smart cookie. Her 3rd birthday is in August and I am pleased with her progress over the year.
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#265 of 735 Old 06-24-2006, 10:25 PM
 
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My son has down syndrome, hearing loss, non verbal, SIDS and heart conditions.
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#266 of 735 Old 06-27-2006, 08:29 PM
 
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Hi there,

My son was recently diagnosed with high functioning autism and sensory integration disorder. He will be three in July.

I also have a three month old daughter, who so far has no diagnoses.
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#267 of 735 Old 06-28-2006, 07:02 PM
 
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My son was just diagnosed w/ spastic hemiplegia, affecting his left side. It was an expected dx, as we had a very difficult birth. He's now 17 months and has been in PT/OT since he was 8 months old. He's doing pretty good, he just started to commando crawl and can go from all-fours to sitting! Yay early intervention!
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#268 of 735 Old 06-29-2006, 04:36 PM
 
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I'll add to the group:

My son Jacoby "Jack" was dx PDD-NOS at 2.5. He's had in-home Speech and Early Childhood therapy for about 7 mos and is due to start a special preschool in the fall. We have seen a DAN! and are on serious supplements and gf/cf (at least for now, under the 'healing the gut' theory).

Love this group!

Jen
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#269 of 735 Old 06-30-2006, 03:52 AM
 
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I am the proud mom of two special little spirits. My son is 5 and has ADHD, has a 2yr delay in Speech and Language which he has been receiving therapy in a centere based intergrated Pre-K program for over a year 5 days per week. He also has Asthma and is starting to display signs of OCD. He will enter Kindergarten in the fall in a 15:1: Speech and Language based special ed. class. I believe my son displays Autisic tendencies as well. My daughter is 21 months and has been dx'd as having a delay in speech as well. I have been told she is at a 6-9month old level of speech and her expressive language is at about 12months. She need to have a hearing evaluation also, she may not be hearing fully. I feel she is showing some similar behaviors as my son and she is becoming increasingly frustrated due to the fact she cannot not speak. This is causing he to act out more and have tantrums often.
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#270 of 735 Old 07-01-2006, 06:49 AM
 
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My daughter will be 3 in August thanks to the gift of organ donation. She had Biliary Atresia (liver disease), and had a liver transplant at 7 mths. of age. She also has Rubenstein Taybi syndrome (1st time that I have ever "admitted" this...I have been in denial)....although she seems to be fairly high functioning. Her most significant delay is speech. She has some words, and her ability to understand is amazing, but she is very delayed in her verbal skills. She runs all over the house, and she truly is an amazing little angel here on Earth. She also had a heart cath done at 4 mths. for a PDA that had not closed. In her first 7 mths. she had 5 surgeries. It was a ROUGH year! The other area of delay is in feeding. : Some days I feel like I cannot do anything right! She has chewing/swallowing issues and vomits frequently! She has SEVERE allergies to eggs, nuts, shellfish, wheat, and rice and moderate allergies to soy and milk. She does keep us on our toes, but I wouldn't trade her for anything in the world. I am glad that I found this forum! Finally a place where I feel like I "fit in"!

Angie
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