March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

MIRACLE BABY NATALIE

My Miracle baby Natalie

September 2010

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

NATALIES DIAGNOSIS

Jul 21, 2010 04:44pm (EST)

Hey everyone sorry i have not posted anything for a while i been very busy lately

soooo lets begin since my last post alote has happened Natalie has been in and out of the hospital a few times one of them was for a feveral seizure boy was that scary for me Natalie had a high fever that kept going a coming when her dad and i finally got the fever down she fell asleep and when she woke up i gave her a bottle then she started to throw up a whole lot when i picked her up her hands and legs started shaking so we called 911 when we got to the emergency room she was giving tylenol her temp just got worst it went up to 106 the doctors had to keep her cool they even wet a diaper with cold water and put it on her

so of course she was admitted cause of her other medical issues

so while waiting at the emergency room the doctors did a cat scan of Natalies brain to make sure that her shunt was working right soo it turned out that one of the ventricals in her brain were a bit larger then the last M.R.I, so i spoke with the neuro doctors and they said that they are going to have to replace her shunt again

but that it wasn't an emergency they didn't have to do it right away as long as she looks and acts ok not to worry so now im waiting for another M.R.I to be done to see how much more the ventrical has grown, then after that she will be scheduled for her surgery sometime this coming September

soo besides that she stayed in the hospital for two days,the doctors said she just had a common cold

since then my Natalie has been doing well thanx to god she now says mama and papa her vision has gotten a little better she still is unable to sit without support but shes is commando crawling

yay!! for Natalie

Natalie is still unable to eat any solid foods she only intakes puree foods and pediasure she is now seeing a G.I specialist for that issue, they say that she has a sensory issue

so thats one of the things were working on now. Natalie now receives pt,ot,vision,speech and feeding therapy threw the light house and hand and hand oh yea and she claps her hands when i sing or whenever she hears music or anyone say yay!!! LOL i love her soooo much

so yesterday i finally got her diagnosis after 23 months the neuro development doctor said she has mild cerebral palsy

i wanted to just cry i swear i always had that gut feeling that she had cerebral palsy but to hear the doctor say it, it hurt me alote since then all ive done is worry,worry about her future and who will take care of her if im no longer around i dont know i guess its just the worrys any mother with a special needs child would have

but besides that everything is great with Natalie

oh yea those who read my blog know i had a birthday dilemma last year for Natalies birthday and i wasn't sure what to do and we ended up doing something very small with just the Immediate family i just wanted to say that this year shes going to get a big birthday celebration i will post pics im soo excited

she deserves it ily Natalie!!

28709_131432166871768_100000149570472_371485_8344545_n

my blackberry pics and videos 021

my blackberry pics and videos 025

my blackberry pics and videos 039

Posted by My Miracle baby Natalie | Comments: (1) | Permalink

NATALIE'S MRI

Apr 30, 2010 06:51am (EST)

Natalie finaly got her MRI done boy was I so nervous she had to be sedated but thanks to god everything went well now I have to wait for the follow up appointment to find out the results

Natalie also had to see a swallowing disorder specialist because she dosent eat any solid foods yet, at that clinic they took x rays of her throat while I gave her milk and they said that she came out great her test were normal that she just has a sensory issue she needs feeding therapy, she is going to begin therapy on monday he's going to do speech and feeding 3x30 wow! Natalie is a very busy baby she has vision therapy 3x30 and physical,ocupational therapy 2x30 she's getting a standing device to help her with standing and it will help her back muscles get stronger so I'm really looking forward to getting it

Posted by My Miracle baby Natalie | Comments: (1) | Permalink

UPDATE OF NATALIE

Apr 05, 2010 12:55pm (EST)

Hey everyone!!! its been a while since my last post,i wanted to give a little update on Natalies status well lets start by saying Natalie had a feeding and speech evaluation and she was finally approved,she still has her ot,pt,and vision therapist , all is going well Natalie is sitting for 30 seconds but holding herself up, as for the vision therapy shes doing ok she dosent have very good vision but shes definetly is trying she can see from close and she likes colors and lights she dosent focus much but she is trying lil bit at a time ... she also has to see a G.I specialist this week to find out whats going on with her that she has trouble eating any solids every time i give her ANYTHING that isn't milk she throws it up

she makes me feel so bad because all she eats is pediasure I'm dieing for her to
"?'9
another thing is that were finally going to get the MRI done ive waited so long its going to be done on April 19th she will have to be sadated for the test the developmental specialist said that the MRI wasn't going to show much all it was going to show is how much of her brain was damaged and where and i told him well thats what i wanna know i think i deserve to know whats going on with my babys brain some doctors are so silly sometimes any ways as for Natalies vision she isn't able to see from far but she can see somewhat from close she tracks and she loves black and white pictures or anything that lights up and plays music

hummm what else

what else can i say Natalie is serverly delayed and i was told that she probably isn't going to be able to walk until about the age of four or five years old so i recently purchased a big stroller that holds about 45 pounds

im ready for whatever,at this time Natalie has not said her first word yet she is trying and I'm very confident that she will say something soon

at this point my biggest worries are that there going to have to put a g tube so that she can eat

does anyone have any information or experience that can share with me about the G tube?? please share with me ... im also walking this year in the march of dimes walk in Manhattan on April 25th www.http://marchforbabies.org/jennifer_818

25757_115573405124311_100000149570472_294449_4970025_n

26448_114816861866632_100000149570472_289790_517594_n

Posted by My Miracle baby Natalie | Comments: (1) | Permalink

NATALIE STARTED VISION THERAPY

Nov 06, 2009 07:58pm (EST)

Natalie started vision therapy threw the Light House she already has has four sessions the therapist is great he has a flash light and some black and white cards that Natalie loves sooo much he's working on her with focusing and reaching out he say that Natalie cant see well from far it just a blur to her, that it would be better if we lit up everything with the flash light for her so that she can get a better picture of things

i am so happy that my Natalie started getting services for the eyes i waited sooo long for it.. if you read my earlier blogs it would explain that Natalie has vision delay and that she wasn't able to see anything for a very long time i am now happy to say that my little princess is tracking and smiling when she sees my face or her daddy's face she also reaches for toys when there in front of her

the only thing is that once you move the toy further away she looses track and dosent see it any more hopefully with vision therapy she gets now that will get better, i thought that at one point my Natalie was going to be blind she dosent see to well but i am soooo grateful that she can at least see something

natalie

Posted by My Miracle baby Natalie | Comments: (3) | Permalink

FEEDING ISSUES PLEASE HELP!!!

Nov 06, 2009 07:33pm (EST)

MY Natalie is giving me some problems when feeding when i give her any kind of baby food and she gags.. today i bought these little banana puffs from Gerber it dissolves in the mouth and i try to give her a piece and she threw up and kept on gaging i dont know what to do Natalie is now one years old and three months she is suppose to be eating solid foods i feel so bad i dont know what to do... what am i suppose to feed her if she gags every time

i still give her Enfamil with cereal she gets WIC and they are about to change her WIC from Enfamil to regular cow milk what am i suppose to do i also spoke with a nutritionist and i told her about what Nat does every time i try to feed her and she told me to still give her the baby food even if she gags, that Natalie gags because the baby food is a different taste and feeling in her mouth but that with time and practice she will get better

that was a month ago and Nat still gags i try and i honestly dont think that she is ready can someone please give me some advice on this situation it would greatly be appreciated

Posted by My Miracle baby Natalie | Comments: (5) | Permalink

NATALIES SHUNT HAD TO BE REVISED

Oct 15, 2009 10:12am (EST)

On Monday October 7th my Natalie woke up a bit later than usual when i picked her up from her crib she was very sleepy i was confused because she had woke up late and i was wondering how can she still be so sleepy as time went by i noticed that Nat wasn't acting herself she wasn't as playful and was very quite.
I didn't wait any longer to take her to the emergency room when we got there i has explained Natalies medical history to the doctor since Natalie has a V.P Shunt she requested that Nat have a cat scan and a ex ray done while we we waiting nats dad and i, when the doctor came back she said that Nat had to be admitted because her shunt isn't working when the doctor showed me Natalies cat scan i started to cry

she had sooo much fluid in her brain building up the doctor also said that Natalie was already symptomatic at that point the doctor paged the neuro team to come see Natalie.
when he came down he said that he had to drain fluid from her shunt to releave the pressure of her brain he he stuck this needle on the side of her head where the shunt is at and drained fluid at that time he also told us that if we didn't bring her in she could have went into a coma and even died at this point i was scared nervous i was crying

i couldn't even sit still i thought to myself why this has to happen to me again,Natalie had to get surgery in the next couple of hours to revised the shunt ...
The neuro team took us upstairs were the operating room is i got to go in the at least see her get put to sleep in the operating room there were so many light and metal i was so scared for my baby.The surgery took about 1 hour when she was brought back to the room she was still very sleepy because of the anastesia.. as the hours went by Natalie opened her eyes and started acting like herself again she was kicking and making sounds i felt soooo releaved that everything went so well Natalie spent two days in the PICU then was sent home... now thanks to god shes been doing well

I just wanted to say to all those moms whom have kids with VP Shunts to take it easy trust me i know its hard the neuro doctors also told me that a shunt malfunction is something that can happen and that some kids get it revised more usual than others

before surgery

she was hungry couldnt eat for a few hours

after surgery was done

Oct07_003

few days later

mom 016

Posted by My Miracle baby Natalie | Comments: (7) | Permalink

UPDATE ON MY NATALIE

Sep 29, 2009 05:54pm (EST)

My Natalie is now 13 months and 11 days she still isn't sitting down

every time we try to sit her up she falls to the side she cant hold herself up at all,Natalie is receiving occupational therapy and physical therapy both therapist are now helping her to sit up, im kinda a little bit inpatient i cant wait till my little princess sits up all on her own another thing is that Natalie has vision delays she couldn't see anything for about 8 months now she started to see a little bit she wears these cute little glasses to help her see better but she doesn't focus on anything,i mean like she wont look directly in my face and i noticed she wont look up or down but some way some how she can see something .. the eye doctors say that hopefully as time goes by she will begin to see better she also said that Natalie sees like a two month old baby..
Natalie just got an evaluation for vision therapy threw the lighthouse and was approved so now were just waiting for the therapist hopefully with the vision therapist Natalie will learn how to focus better

i cant wait for those services to begin. We recently got an evaluation for speech therapy so hopefully she can get that too.Natalie doesn't say any words she just started to put her lips together and said ba so i am so happy because its the beginning of her starting to babel so im very happy about

cant wait till she says ma

i would really love to get some feed back on other parents with children whom have developmental delays..i really would love to hear your childs story ...

nat

nat5

Posted by My Miracle baby Natalie | Comments: (3) | Permalink

MY BABY NATALIE 1ST BIRTHDAY

Aug 20, 2009 06:12am (EST)

Natalies birthday was very simple we bought her a cake cooked some dinner it was cool natalie was very happy it was myself my husband,my 2 oldest kids and my grandmother.
When we sang happy birthday natalie looked as if she was going to cry it was so cute!! i am very happy that i desided to make her a small birthday party everything went well we also took natalie to toys r us and bought her all kinds of new toys even a baby rocking chair that she just loves.
THANK YOU ALL FOR THE SUPPORT U GAVE ON NATALIES BIRTHDAY DELEMA IT WAS VERY HELPFULL

Picture 015

Picture 014

Picture 023

Posted by My Miracle baby Natalie | Comments: (6) | Permalink

NATALIES VISIT TO HER NEURO DEVELOPMENT DOCTOR

Jul 29, 2009 11:26am (EST)

I been waiting on this appointment for a while because i wanted to request for an MRI, when i asked the doctor for the test to be done he said that he did not think it was a good idea for her to get it now because she still is very young and they didn't want to repeat it again in the future,he asked me why i wanted to get an MRI my answer was that i wanted to get a diagnosis for my baby already its been frustrating just waiting ,he said that the MRI was not going to tell me my baby's diagnosis it was just going to show me how much of Natalie's brain was damaged

I wanted to know if my Natalie was going to have Cerebal Palsey or Autism or anything like, the doctor had explained to me that an MRI could not tell me those things that it all depends on how the baby develops that its a waiting process

as a parent its so hard to wait i am so inpatient

Natalie is now 11 months corrected age 8 months she will be 1 years old on august 18th of next month shes delayed she dose not sit up yet nore crawls she does roll over now and started to see very little i noticed she sees from close up.so she has been improving just slowly i just hate when people ask me questions about her and say things about her like yesturday at the clinic my oldest daughter over heard another little girl say that little baby is ugly because she keeps moving her head back and forth like shes blind

i was so freaking pissed off and it hurt my oldest daughters feelings

i am just soooo over welmed with everything and everybody

nat 060

Posted by My Miracle baby Natalie | Comments: (6) | Permalink

IM CRYING OUT FOR ADVICE PLEASE HELP!!

Jul 23, 2009 05:39pm (EST)

Natalie cant see and nobody has any answers for me, i feel as if i am the only one in the world going threw this vision delay issue, i asked the Opthamalogist and she said wait until Natalie turns six months, Natalie is now 11 months and she is'nt seeing to much of anything i noticed that she sometimes follows things when there close to her face but thats only sometimes.

I often start to cry because i dont know what to do with her i feel as if she is bored all the time. when she wakes up in the morning all she does is stare into space she doesnt play she doesnt do much of anything it brakes my heart .

I spoke to Natalies Service Coordinator and asked her if she can write up a referral for vision therapy to see if that can help my baby.i dont know what to do anymore,yesturday My family and i went to the childrens zoo my other kids had a great time but i feel that my Natalie didnt get her chance to enjoy anything due to her eye sight problem and everytime i take her pictures shes never looking into the camera

it hurts me so much it brakes my heart. My Natalie has a grade three bleed and a V.P shunt she has Developmental Delays and Vision Delay we are waiting until the Neuro Development Specialist says its ok for her to have an M.R.I so at hopefully we can A diagnosis and better understand Natalie

SOMEONE PLEASE HELP ME WITH MY SITUATION CAN SOMEONE HELP ME BETTER UNDERSTAND A BABY WHO HAS VISION PROBLEMS

nat 032

nat 057

Posted by My Miracle baby Natalie | Comments: (4) | Permalink