Katies_Story

Hello and Welcome to my special little place on the Web!

My name is Katie and I was born on January 3rd, 2001

I continue to remain thankful to those of you who are praying for me, and my gaurdian angel for watching over me

Not any of the information provided in this web site should be used as a substitute for the advice/help of your your own Doctor or Therapist. All children are unique and what might be good for one child may be totally wrong for another. Please just read this for what it is .........Katie's Story.

Katie's Story Summary with All Medical Information

Katie�s Story-

Katie Did not grow much in the womb in the final month and needed help to be born on January 3rd 2001 through induction as Mother had spent 4 days in labor without any success on her own. Katie arrived weighting 6lbs 13oz with her right eye closed for the first 2 days of life.

~ Since Birth Katie always had bouts of projectile diarrhea, often these were blamed on a virus or something mom ate since her mother was nursing. She also has always been a child who sweats lots. And when she switched to bottles after nursing, she preferred her bottle quite a bit warmer in comparison to what is 'normal'.

~ She spent her first few months asleep. Grunted like it was a lot of hard work on her whenever someone moved her. She jolted every time her back was tapped in the slightest way. Loved lying on her belly so she was able to suck her thumb.

March 2nd 2001

2 months of age, -weighting 12lbs, 9.5 ozs

~ The GP Family Doctor discovered a blood ball in her neck and that she had torticollis.
April 4th, 10th, 18th, 2001
At 3 months of age

~ After harsh, cruel, possibly abusive; physio-therapy by a PT administered on those dates, Katie's torticollis was resolved by April 18th.

~ Katie started to prefer just laying on her back twirling her hands and feet, she did not like to be touched, and hated to be moved or rocked or soothed in any way. Greatly was affected and became upset by sudden movements within her surroundings or any type of noise (sneeze, cough etc). The only way to calm Katie was to lay her in her crib in her quiet bedroom. She developed a severe stranger anxiety and when in public if someone talked to her she would start screaming and the only way to get her calmed down was to bring her home and place her in her bed.

May 2001
 
At 5 months of age - weighting 14lbs 2 oz -head circumference=17.6inches
* Katie was able to sit if propped

June 2001,
At 6 months of age
~Nursing ended and Katie's projectile bowel movements slowed right down, they still existed but not as often.
 
October 2001

At 10 months of age.
~The Family Doctor was concerned that Katie was not developing properly in gross motor as she just preferred to lie on her back. He wanted her to go the Hospital for a developmental assessment.
 
December 2001
 At 11 months of age
*Katie started to roll

January 16th 2002
At 1 years old -weighting 19lbs
~ Katie went to the hospital for her assessment, she appeared very healthy but there was concern over the growth of her head, this being in the largest percentile with her body being in the lowest, Cat scan was decided, fine motor skills....perfect, gross motor skills are equal to a 6 month old baby.
-> Katie dxed as having low muscle tone and hypermobile joints.
*Katie Pulled to stand from sitting, hates sideways movements and having her hands touched

January 24th 2002
~Katie had her first PT session with a new Physio Therapist
February 6th 2002
1 year 1 month -weights 19lbs, 11 0zs, 29inches tall and head circumference of 19 inches
-> Katie had her head scan, results showed no problems
February 13th 2002
~ First assessment from the Rehabilitation Centre Childrens Program., dxed that she has low muscle tone, joint hypermobility and sensitivity to movement. Katie becomes too stressed from movements, which interferes with her transition skills. Good strength in her legs. Gets upset with prolonged eye contact
*Starts commando crawling, but does not stick with it.

February 22nd, - April 12th Occupational Therapist from Rehabilitation Center makes home visits with Katie. Hoping Katie will be more at ease in her own home, Katie had strong stranger anxiety towards her like she has with everyone.
*Katie got out of sitting for the first time, pulling and pushing to stand from sitting in a chair or stool, able to put tiny objects into tiny holes. Does not bare weight on hands and uses her elbows a lot for full time command crawling, no longer using rolling as her form of transportation.
*Katie starts walking along the furniture with locked knees.

April 22nd 2002
1 year 3 months - weighting 20lbs, 2.5 ozs and head circumference grew up and off the chart. 
~Katie's extra weakness and a blood test ordered by Family Doctor showed she was low on Iron. Iron supplement given.

May 2002,
1 year 4 months
~OT introduces brush therapy with Katie. Katie handles the brush well but she screams through the joint compressions; apparently this is a very odd reaction.
*Katie now crawling on elbows and knees, walks along furniture and walls, and learns to sit up for the first time, she can also pull to stand from sitting on the floor.

May 25th 2002
~Blood test for iron drawn and the results were good.
Often it is noticed that Katie has her good days and bad days, she has a lot of 'strong days and weak days as well. She still is experiencing sensory issues towards movements, sounds and people. Her language skills appeared to come and go based on her focus of gross motor skills.

July 2002
1 year 6months
~ Katie's head circumference at 20 inches remains on the rise in her growth chart while her weight 20lbs 15ozs and height 74cms appears to be dropping on her line.

July 15th 2002
~days of severe diarrhea, weakness and heat sent Katie to see The Family Doctor as she was appearing to be dehydrated. He diagnosed her as suffering summer flu and put her on a pedialyte only diet. Her strength did not come back for a couple of weeks and her diarrhea remained bad for up to a weak after she was back to eating normal foods. Almost one whole month.
 
August 2002
 1 year 7 months
~ Transition issues are still highly noted with Katie. However she is appearing to handle her stress of strangers better. Days consisting of extra weakness are always noticed. A better supported boot did help stop the many falls and ankle sprains/strains she was suffering.
September 5th 2002
1 year 8 months
~ Rehabilitation Centers children�s team Clinic Review
PT: -generalized hypermobility and hypotonia are having less impact on movement than previously
OT:- Sensory issues reducing significantly, only with stress of new surroundings or transitions is noted.
~Katie joined with the Early Childhood Intervention Program.

September 25th 2002
~Katie was seen by Eye Specialist to have her eyes checked, he confirmed that Katie had wonderful eye sight.
Katie has too many inconsistent days, some are very good while others are not good at all she becomes high strung in her 'sensory' issues, there does not seem to be any connection as to what causes these behavior ups and downs. She also has suffered a few sprains/strains to her left ankle, she does much better when she keeps her well supported boots on. Her unknown cause of bouts of projectile diarrhea continues.

December 2002 
1 year 11 months
~Katie's diarrhea came and stayed, her mother realized that the "Christmas" oranges were a new regular in Katie's diet and took Katie off of those. Once Katie seemed back to normal her mother gave her 1/3 of an orange slice and sure enough Katie reacted with her diarrhea problem consisting of several dirty diapers with watery stool in it and constant wet 'farts'. This episode with the common cold added to it seemed to leave Katie extremely weak, so weak that she was unable to open Christmas presents.

January 28th 2003
2 years old weighting-23lbs 12ozs, height 31 � inches and head measuring 20inches
Katie continues good and bad days in her sensory behavior but she is blooming through the ECIP playgroup program in her gross motor and social skills.

May-July 2003 
~ Katie's projectile bms come to stay again, Katie was getting weaker, With the heat her mother had introduced power aide for a daily drink for Katie. A Main ingredient is Citric acid, realizing this could be like the ORANGES the mother took all citric acid products out of Katie's diet. Still the problem continued and a realization that Citrate and Ascorbic acid had to be removed from Katie's diet as well. This too was discussed with the family Doctor and the Dietician at the Rehabilitation center.
Each time Katie had an exposure to one of these items she started to get severe stomach cramps. Then her extremely watery bowel would happen over the period of 12 hours with several soiled diapers leaking her watery bm. During a more severe reaction time, Katie's bottom was leaking watery stool that would not stop, the same as a tap leaking water. Ester C was found out to be the only non acedic form of Vitamin C and so it was purchased for Katie to try, she reacted to it. The caplet comes in a 500mg size and Katie had been given approx 1/8 of the caplet.
Times when Katie is going totally without vitamin C her weakness is really showing, she will lay around and does not have energy for anything, she will fall more often as well.
With Each exposure Katie's tolerance level of C appears to be continually dropping.

September 2nd 2003
Family Doctor Gave Katie Bentylol Syrup as a prescription to help Katie's stomach cramps during reactions, the medication seemed to work and Katie has not had a stomach cramp since.
Mother decided to take advantage of this and get some more vitamin C in Katie's body, Mother gave Katie one 6 oz glass of a drink that had a minimum amount of ascorbic acid in it, although Katie did not have cramps, Katie did soil 9 diapers over a 18 hour period.
Mother then tried to give Katie some scrapings off of the Ester C caplet, very tiny scrapings and on September 6th 2003 Katie's body was itchy all over and she had a couple of hives.
Currently mother has taken her off of all forms of vitamin C and the Bentylol.
Katie returns to the Early Childhood intervention program after summer break, it is very apparent that her gross motor skills are dropping.
September 8th- Katie was hospitalized order by An Allergy Specialist with several tests ran on her involving x-rays, blood, urine and stool, The first 3 days in the hospital they kept Katie to the vitamin C free diet, and Katie although very weak was not getting sick. She ate bananas, puddings (high in sugar), Citric free breads, cakes, peanut butter (high in sucrose and sugar) porridge with brown sugar ect.. Then they wanted to see her get sick and so they gave her a high C diet. Right away her little appetite left and she developed high sensory behavior (Mother tried to point this out to the nurse who said "all kids get this way when they are trapped in the hospital") Mother does not agree to that statement because Katie was in her glory laying around in bed watching her favorite shows in fact she got spoiled there and expected the SAME treatment at home!, But before they saw her get sick, get very sick with her diarrhea and stomach cramps, they released her on the 12th of September with the diagnosis of fructose intolerance and the promise that a metabolic doctor would be in touch. Also Katie was released with a prescription for an infection that did show up in her urine.
Once home Katie continued to get sicker and sicker soiling 12-18 diapers a day, Mother having Katie on a strict citric acid free diet could not understand WHY? and phoned the pharmacy to find out that there was citric acid in Katie's medicine, mother threw out the medicine and Katie got better.
Mother studies fructose intolerance, joined a few support groups for that to realize this is SO NOT KATIE! The only fruit Katie can eat and not get sick off of is Bananas and Fructose kids, if they eat a banana they automatically go into convulsions and seizures.
Facts, when mother ruled all vitamin C type ingredients out of Katie's diet, Katie appears fine, Katie can eat bananas, drink A+W root beer (the only available pop that does not contain citric acid), eat Dairy Queen ice cream and other ice creams and puddings that do not contain citric acid, eat any type of candy and or sweets without citric acid. etc, and appears fine.
Mother wrote to March of dimes and received this information:

Thank you for your recent request for information from the March of Dimes. It is very good that your daughter's doctors diagnosed her with Fructose Intolerance, assuming this is the proper diagnosis. This is a rare disorder and often is overlooked. She will be in much better shape knowing what it is and acting accordingly. There is a high amount of fructose in citrus fruits and juices. It may be that what you think you see as an ascorbic or citric acid or vitamin C sensitivity is actually the fructose intolerance. Unless there is fructose in vitamin C tablets, we do not see another connection because these two substances are not chemically related. It would be best to avoid all citrus fruits and juices until you have had the opportunity to meet with the metabolic doctor and receive dietary instructions.  Again, thank you for contacting us. We hope this is helpful and wish your little girl well.

Mother Also got in Contact with Dr. Dean Tolan, Director of Hereditary Fructose Intolerance Laboratory at the Boston University, whom after reading Katie's health report as seen above replied with this:
If what I read was correct, if your daughter improves or does not get ill when eating bananas, ice cream and root beer, then it does not sound much like hereditary fructose intolerance.

October 24th, 2003

Katie finally meets and is reviewed by the Metabolic doctor who dxed her long distance with the Fructose Intolerance label and informed Mother that there is no such thing as citric acid allergies, that it must be something else. Mother was also told she was silly to worry about scurvy developing in Katie with her low ascorbic acid intake, also the Metabolic doctor rules out Fructose as Katie could eat bananas and other sugared items without being sick. Tests were ordered and Imodium was prescribed for Katie�s diarrhea, also mother was advised if Katie seems to react to citric acid and ascorbic acid then do not give her any as there is tons of hidden vitamin C in every thing, mother stated she was aware of all the hidden vitamin C every time Katie got sick.

October 31st, 2003- Mother writes to Metabolic Doctor-
Dear Dr. ------

First I would like to take the time to thank you for allowing Katie and I to
meet you up in ----------. I would also like to mention my FEARS were not 
rightly addressed in my concerns of giving Katie the best help I can.

I am not sure if you were able to get these fears out of all the information
I gave you and so I would like to sum it up in a sentence here......
Katie's minimum Need of Vitamin C is 15mgs according to Canada's numbers to
protect a child Katie's age from Scurvy, I have the USDA report of all the
"HIDDEN" Vitamin C in common measurements of over 5000 every day items and I
know Katie can tolerate 5mgs and she can not tolerate her needed amount of
15mgs of C, MOST children Katies age are taking in 300 or more MGS of C a
day. This is WHY I fear scurvy in her.

I know this intolerance to ascorbic/citric acid has dropped, she use to
be able to have a glass of apple juice a day, and now she no longer can. She
can not tolerate any of the ascorbate acids found in pill forms or in a
natural form such as fruits.

If you can picture a severe case of Lactose Intolerance, this is Katie only
instead of milk-with citric acid and ascorbic acid(vitamin C).

For Lactose Intolerance - people can take calcium pills to make up for the
milk, what can I give Katie to make up for this lost Vitamin C?

Thank-you for reading my concerns.
Nadine
Her Reply-
thanks for your note- I understand your concerns but as I told you I doubt
the problem is an intolerance to citric acid per se- this is what you are
focussed on but there must be something else- I don't feel it is fructose
intolerance as Katie can take table sugar, bananas and honey. Her blood test results
are all normal so far- but still awaiting the tests for coeliac disease then
she should see a gastroenterologist for children! We will keep you posted on
the further test results. best wishes ------------

X-Ray Results come in that Katie is constipated; Imodium is the worst thing for her to have!
Radiology report;
 
Three views of the Abdomen
Chest- The Mediastinal silhouettes, hila and pulmonary vascularity are normal
 
Abdomen- There is a moderate amount of Fecal Material within the colon. There is no convincing evidence of obstruction or lieus at this time. There is a non-specific appearance.
 
Radiology Report
Skull-no obvious calvarial abnormality is seen. The selia turcica is normal in appearance.
 
Ultra Sound Report
 
Renal Ultrasound-Both Kidneys are normal is size and contour. The left Kidney is about 8.3cm in length and the right Kidney is about 8.1 cm. No evidence of hydronephrosis, mass, calculus, or congenital anomaly.
 
Radiology report- Approximately 125cc of Conray was instilled into the urinary bladder. There is no evidence of active reflux.
THe patient was not able or did not want to void while on the table. A post film was obtained later. There was no evidence of reflux on the post void film.
 
Blood
Results- Plasma amino acids appear normal
 
Urinary Amino acids appear normal
 
Urinary organic acids appear normal

high cholesterol, Gamma GT low, Kidney-normal, liver-fine, blood count-o.k. And the anti-smooth muscle positive to less than 1:40

Hematology Report From Metabolic Doctor
October 24th, 2003 
TestName        Result                    Ref.Range
WBC               8.8                      5.0-15.0
RBC               4.31                     3.40-5.20
Hemoglobin        122                      105-142
Hematocrit        0.358                    0.315-0.426
MCV               83.1                     79.0-97.0
MCH               28.4                     24.0-34.0
MCHC              341                      320-360
RDW               12.5                     11.5-15.0
Platelets         346                      150-400
MPV               8.4                      7.4-10.6
Neutrophils       3.14                     1.50-7.50
Lymphocytes       4.7                       2.0-8.5
Monocytes         0.7                       0.2-1.0
Eosinophils       0.3                       0.0-0.6
Basophils         0.0                       0.0-0.2
 
Special Hematology/Immunology
Collected 24/10/03 11:14am
AntiSmooth Muscle Scrn       *POSITIVE
AntiSmooth Muscle Titer        *1/40            <1:40
 
Chemistry 
Collected 24/10/03 11:14am
TestName            Result                    Ref.Range
Na                   136                        135-146
K                    3.8                         3.5-5.1
C1                   106                        100-110
CO2(total)            21                         18-27
Glucose Random       4.5                         3.6-10.0
Bilirubin Total       8                            2-22
AST                   43                          10-60
ALT                   16                           5-45
ALP                   243                         150-300
GGT                    9          LOW               10-35
Protein Total         67                           60-80
Albumin               39                           35-52
Uric Acid             194                         120-450
Cholesterol-total     4.92        HIGH          3.20-4.40
CK                     82                          30-270
Lactate              0.90                        0.60-2.40
 
Special Chemistry
Collected 24/10/03 11:14am
Alpha-fetoprotein,serum 3.3                   0.0-12.0
 
Chemistry Misc 
Collected 24/10/03 11:14am
Ammonia                        34              10-40

Katie�s health was really deteriorating, she was barely eating, and some days mother was lucky to get 8-10ozs of fluid into her. She became quite dehydrated, so that her urine was brown, Mother was scared to take her into the hospital incase an IV would be used filled with Citric acid. As the Blood results came in it was noticed that No Ascorbic acid count was done, the main reason for Katie to have seen a doctor in the first place. Mother talked to the local doctors almost daily about her condition, they told her to take Citric acid out of her diet, this is why she is so sick, Mother kept being asked WHY ARE YOU STILL GIVING IT TO HER? AND KEPT BEING TOLD HOW SILLY She WAS TO THINK SCURVY, KATIE DID NOT HAVE SCURVY.,

Mother had a hard time trying to CONVINCE the Allergy Doctor that YES KATIE HAD SCURVY!!!!! The allergy specialist told her that she was overreacting, as Canada has not had a scurvy case in over 40 years. Mother continued to fight to get this blood work done, and finally said well test her and PROVE me wrong- then I will stop
harassing you! The Allergy Specialist agreed to the test, When she took Katie in the next day to get the blood order, the specialist had changed his mind and said no it was not needed after all. She took with her a list of scurvy symptoms and pointed out all of the symptoms that Katie had-

Deficiency symptoms include: 
generalized swelling, Yes
dry skin, Yes
small skin hemorrhages (ecchymosis and petechiae), No
easy bruising, Yes
nosebleeds, No
bleeding gums, No
increased cholesterol levels, Yes 
weak teeth and bones in children, ??????? 
loose teeth, Not severe but they do wiggle 
separation of the ends of long bones, ?????????
swollen/aching joints, yes
aching muscles/extremeties, yes 
dry/thinning hair, maybe
swelling or hardening of hair follicles (hyperkeratosis),  YES she has had this for a very long time! 
drying of tear glands, ??????
decreased appetite, Definately
weakness, yes
fatigue, yes
depression, (?) 
stress, Yes
emotional agitation, Yes
shortness of breath, Yes 
muscle weakness, Hypotonia!
anemia, has been a problem, do not currently know if it is
decreased weight,  yes
deterioration of digestion, appears there is problems! 
slow healing, ??????? Maybe
decreased immunity/cancer resistance, Probably 
gallstones, (???????????)
decreased heat/cold tolerance, I think so
back trouble. Sometimes she complains her back hurts
 
He sat down dumbfounded and Mother stated she wanted Katie tested NOW, She had to towered over him and asked him if he would write it out now, he said he did not know what to write down, 
So She told him Ascorbic acid count on the white cells. He didn't start 
writing, She said it is spelled A_S_C_O, he started writing. He gave her 
the test paper, she left to Get Katie's test

Katie has a very good Family doctor, but he is JUST a family doctor although it is 
Believed that he has far more sense then any of Katie's other doctors, Mother did not want to involve him in the fight, but she took Katie to see him many times and he would check Katie over and verify that she was not NUTS:)! THank God. On Katie's test order for scurvy, the family doctors name was wrote to receive a copy of the results.

The Results were obtained and shared by the family doctor the specialist kept denying that he even received these results and has not talked to Katie�s mom since. In fact the Specialist was called every day from when these results were due and Mother was told they were not in yet, in her anger she went to see the family doctor for the results who gave them to her right away, they were;

Katie's level was 29.5
Normal is 45.4-85.1

He told mother that Katie had 6-8 months left if something does not change, she 
broke down in front of him and informed him the other doctors don't 
believe her. He offered hope by telling her he would do whatever he 
could do to get Katie an injectible form of ascorbic acid that would not be tainted with citric acid. 
Hematology Report taken the same day
November 4th, 2003 
CBC
TestName        Result                      Ref.Range
WBC              7.3                          6.0-18.0
RBC              4.19                         3.60-5.20
Hemoglobin        118                         110-130
Hematocrit       0.348       LOW              0.360-0.440
MCV               83.1                        70.0-86.0
MCH               28.3                        23.0-31.0
MCHC              340                         320-360
RDW               13.2                        11.5-14.5
Platelets         306                         150-400
MPV               7.9                         7.4-10.4
Neutrophils       1.9        LOW              2.0-6.0
Lymphocytes       4.4        LOW              5.5-8.5
Monocytes         0.7                          0.7-1.5
Eosinophils       0.3                          0.0-0.4
Basophils         0.0                          0.0-0.1
 
Iron Studies
November 4th
TestName        Result                    Ref.Range
Iron               9.9                       7.0-32.0
TIBC               72.6                      45.0-80.0
Ferritin            9        LOW             10-200

He pointed out Katie�s lymphocytes and said this was of a great concern, He said 
the other doctors can NOT ignore these results, they will help now

BULL! They can ignore results-

This was the Metabolic doctors reply to the results
At this stage, Katie is a diagnostic Dilemma. I can not explain the 
low serum ascorbic acid Obtained by the Family Doctor, I am not sure 
were this assay was performed or its reliability or validity of it 
is. I am also uncertain if this was obtained in a fasting state and 
what variables influenced it. I told Katie's mom that to my knowledge 
there is no vitamin C or citric acid allergy and if her Celiac 
disease is normal then I am at a loss to explain Katie's abdominal 
pain.

Mother contacted her and told her where the test was done, how everything 
was followed properly and if she does not believe the results then re-
test under her own order, but the Metabolic doctor refused to do so, instead left these results in the case of DOUBT

Mother Put Vitamin C in Katie�s diet right away, Katie developed a large rash covering her back leg, elbows down to wrists and got her diarrhea and cramping back

Mother started studying Celiac disease and saw how it can cause all kinds 
of allergies, She hopes this has caused Katie's Citric acid allergy and 
prays that in the near future Katie can take normal amounts without 
getting sick from it.

She took Gluten out of the diet and the watery diarrhea started to ease up

Daily phone Calls to the Gastreoentherologist got Katie into seeing him on December 9th 2003 instead of end January 2004 as the date that was originally quoted

Her symptoms still were that of scurvy, but getting better, her rash which was very apparent now and covering about 35-40% of her body at the time of this appointment. At 
first an Intern came in and gave Katie a thorough check over, his 
comment was INDEED this child has a major intolerance to something, Mother 
thanked him and told him besides for the family doctor he was the only 
one to believe her!

THen the Big GI guy comes in and says we will not discuss Celiac 
disease until we do the blood work for it, So Katie's projectile 
diarrhea, he blamed on toddlers diarrhea (a condition children get if 
they drink too much apple juice, it is from the sorbitol in the 
drinks) Her rash all over, he blamed on mother bathing her too much, the 
fact Katie just lays around and has no energy, he blamed on her being 
in a stage,  the fact that some times Mother can not get her to even have 
her first drink until 4 pm he stated "oh "normal toddler behaviour"

exhausted from fighting doctors, Mother argued with him a bit on the 
topics, but was too wore out to take it too far with him. Sorbitol,  
was a little ????? about that, Mother was sure Katie had no sorbitol but 
not 100% positive of that. After leaving the doctor and got into the car to see 
the drink Mother had been trying to feed Katie on the 6 hour trip up to 
see this doctor so Katie would react in front of the doctor (of corse 
she did not react till AFTER they left the GI) Mother checked the bottle- NO 
SORBITOL! Just Citric acid!, She went grocery shopping and checked all 
the stuff she buys, no sorbitol! She bought up stuff went back to the 
doctors dropped it infront of him and said "READ 
THERE IS NO SORBITOL IN ANY OF THIS STUFF" He read all the labels and 
agreed with her, She pointed out the citric acid in the stuff, he 
said "Hmmmm interesting, but she must be getting Sorbitol some place" 
She said not to my knowledge and left.

Katie hit the full Gluten free diet that day, and 10 days later she stopped having tummy pains, the projectile diarrhea is also gone now but the rash grew.

December 23rd 2003, I had just got done talking with the Metabolic doctor on Katie's improvements being on this gluten free diet we had somewhat thought that maybe what I am seeing as a citric acid intolerance could simply be that this form of acid is too hard on Katie's gluten damaged intestine. We were damn near 100% positive that Katie's tTG test would prove Katie had Celiac disease. Later that day the Gastreoenterthologist called me with Katie's tTG results, his answer- "put gluten back in Katie's diet as she proved negative for Celiac disease" My response to him was "there are far too many improvements in Katie with gluten out, I am not putting it back in her diet", He said "she is not Celiac" and that was the end of our conversation.
 
I wrote to Celiac Canada and asked if it was possible that Katie could still have this even though her blood work states NO, (I had read several articles on-line that stated although the biopsy is suppose to be the only 100% accurate diagnosis in Celiac disease, 2% of true celiacs have blood work and the biopsy come back negative and find that going gluten free is the only true diagnosis for them) Celiac Canada told me that the doctor probably wants gluten back in Katie's life so he can re-test her in 6 months also I was informed that 1 in 8 children have false negatives to these tests.
 
I am NOT putting gluten back into Katie's diet at this time.
 
A Celiac RN that I e-mail with sent me this reply-Throughout my nursing practice I have maintained tht NO ONE knows a child better than his/her own mom.  Stick to your guns even if you opinion is different than the so called 'specialists'.  Sometimes they just specialist in making patients and families crazy. If a g-f diet makes her better than do what you have to do.

And gluten remains out of Katie's life, she continues to get better,  and she continues to gain strength, she climbs all over me now:)!

Through many home experiments of food challenges with Katie and with 
keeping excellent intake output diarys, the results appear now that 
the combination of Citric acid and Gluten causes for her to get 
extremely sick, she will get projectile watery BMS up to 16 in a day 
and her bum will leak just like a leaky faucet, it was impossible to 
get her cleaned up some days. Now Gluten is out, her pain is gone and 
so is the projectile diarrhea, she appears to handle enough citric 
acid currently that she can take a vitamin pill, but still her rash 
grew to cover 70% of her body, this rash is not bad especially in comparison to scurvy.
 
Based on research, the Contacts I have had about Katie, and Katie's reactions, her official diagnosis comes from her mom, She has Celiac disease and this has caused a citric acid allergy in her, there is no medical proof of this other then how Katie's body reacts.
 
There is HOPE based on research that Katie could out grow this allergy as her intestines heal, but since she is the only case like this to my knowledge, only time can tell

Katie saw her family doctor Mid January, she had gained back 2 of the three pounds she lost and now weights 28 pounds 5 ozs, he is willing to give her the 'official' diagnosis of Celiac disease if her bloods are all up in July 2004 and she does not fall into a bad episode again.

Since the gluten free diet Katie has learned to run, jump, and has become far more socialable and loving. Right now she is learning to dance, and she is the cutest dancer I have ever seen!

Katie's Latest Medical Testing and Results

Katie just got done her long awaited Doctor appointment on July 19th-

And it was not as good as I hoped it would be:(!

The good news is that Katie did get the OFFICIAL diagnosis of Celiac Disease. Having an OFFICIAL diagnosis really helps in the world of medical crap, without a dx, everyone seems to have a ???????????? opinion and the needed help and respect just is not really there. I HAD NOTICED A HUGE CHANGE IN HOW Katie was treated when she went from a NO DX to an Assumed DX and now she has an Official dx!!!!!!!!!!!!!

The "o.k." news is Katie's weight, according to the scale she has ALWAYS been weighed on, she only weights 31 pounds right now, it is an increase of 3 pounds from January which of corse any gain is a good one, but according to the Wascana scale weight check done in May, Katie is at a 2 pound loss. The doctor and I are choosing to believe that the Wascana scale was way out and are currently focusing on her 3 pound gain.

The 'not so good news"- I guess Katie will always have the ASMA (Anti-Smooth Muscle Antibodies) within her, this will always have to be monitored, so now we wait and see what her GGT count states, it could take up to a month for those results, this is a blood test Katie will have to get use to taking, the least amount of gluten could cause some major problems:(!

The Bad news- Katie has developed what is currently being classed as Colitis, more testing will need to be done, an endoscopy, but firstly the Doctor is seeing what her blood work states and/or whether or not her rectal bleeding increases or decreases. A colitis dx scares me, it carries the same symptoms as the bowel cancer does:(! Of corse though the blood work for both is different, so we wait for the answers

Blood work back on Saturday, the numbers were not as great as I hoped for,

She still remains border line anemic even though she takes iron supplement

Liver still remains o.k. not good - just o.k.,

Lymphocytes are still low but they are not dropping any more, Monocytes have dropped now too though.

-        It all coincides with the Celiac disease complications of Primary Bilinary Chrosis of the liver and Bowel and Intestinal cancers, lymphoma etc. So the fears still hang in there for another 6 months, the blood work will be done again, and I guess we just pray these numbers will rise.

Katie's ECIP (Early Childhood Intervention Program) Reports

June 2004-

Katie and her family have been receiving home visits from the Early Childhood Intervention Program Regina Region since December 2002. Present Interventionist has been involved since July 2003. Katie lives with her Mother and three siblings, Wendy(18), Christine (16), and Nicole (13). Katie helps to care for Family Pets � rabbits, bird and fish.

Katie�s unresolved health issues have seen improvements, since she is showing symptoms of Celiac Disease and has been on a gluten free diet from December 2003. Katie�s abdomen cramping has decreased significantly, she has improved appetite, regular sleeping habits and is enjoying increased strength and energy through the day! Katie developed scurvy due to her intolerance to citric acid and is presently showing decreased symptoms to this. She continues to get a rash through increased levels of vitamin C but currently is accepting small amounts. Katie is gaining weight with her improved eating habits. Nadine is a strong advocate for her daughter�s needs and closely monitors Katie�s nutritional intake and development.

Recommendations-

That Katie and Nadine continue to receive the support provided by the ECIP 
That Katie has her Hearing checked 
That Katie has a follow up Vision appointment 
That Katie be given a variety of opportunities to interact with other children to expand social skills and cooperative play. 
That Katie�s Gross Motor development continue to be monitored by a Physical Therapist.

Activity Summary-

Fine Motor

Katie continues to practice and master skills involving her hands and fingers. With her pre-printing skills, she shows improved control of markers to imitate vertical lines, horizontal lines and a cross. She is able to hold a writing utensil between her first two fingers and thumb (tripod grasp). Katie is starting to draw a person, though unrecognizable she is able to point out the hair, head, eyes, nose, mouth and hands. Katie is very interested in letters and is given the opportunity to practice tracing letter stencils. Pairing the visual models with verbal cues of pencil direction facilitates proper letter formation. Wrist and pressure control are observed, as she is able to imitate folding a piece of paper. Katie is learning to cut paper using child sized scissors. It has been helpful to use the self-opening scissors with a reminder to use a �thumbs up� position. She is also cued to use her other hand as a helper to guide the paper through continuous cuts. Katie attends well to stringing small beads and uses a well-developed pincer grasp to drop buttons into a container. Katie has been introduced to interlocking puzzles with up to 8 pieces. She will help to complete the puzzle with assistance for accurate placement.

Receptive Language

Katie recognizes a variety of named objects, identifies articles of clothing and body parts, even shows where her own elbow is. She demonstrates understanding of action words. Katie is beginning number concepts and is able to follow direction-involving quantity. She rote counts consistently, uses one to one correspondence to count pictures/objects and matches number sets to 5. Katie correctly identifies something soft, round, broken� on request and responds appropriately to placing an object- in, under, in front, behind.  Katie is able to answer what to do when�(Hungry, thirsty) questions that involve problem solving and reasoning skills. She demonstrates understanding of the function of objects and categorization as she identifies what to use to write/eat/play�

Expressive Language

Katie continues to expand her vocabulary. She communicates her needs, wants and shares information with words and short sentences. Her speech is understandable most the time. Katie refers to herself using pronouns, answers questions about her age, names of parent, siblings. Katie answers simply questions appropriately using related words �what is happening here?� She comments about objects and events and understands more abstract concepts such as describing the way we use objects. She identifies missing pieces of a picture and completing opposite analogies. She uses language to express her fears, such as having a bad dream.

Gross Motor

With her increased energy levels Katie is able to participate more fully in large muscle movement. She is walking up and down the stairs unassisted. Katie jumps up and down in place with both feet off the floor and has started to jump down from a 6-inch height. Katie is working on refining her balance and can walk on her tiptoes. Katie is given the opportunity to peddle a small tricycle and is working on building strength and stamina. Nadine and Katie are working on activities to increase her trunk strength and balance using a peanut therapy ball.

Cognition

Attention and memory are closely related, involving auditory and visual memory skills that are fundamental thinking skills for future learning. Katie will attend to activities of interest for a significant amount of time. Throughout the day routine and play activities Katie follows related directions and responds appropriately to requests that involve early sequencing and increased attention to process information. Katie uses non-speech sounds (sounds associated with objects such as car sounds), imitates animal sounds and combines short-term memory (object and instruction) to identify a named object, which was out of sight. She repeats single words, two word sentences, phrases and three digits. Katie accurately points out the correct picture when given words that begin with the same sound.

Katie matches objects, colours and symbols. Increased Spatial awareness is observed as she discriminates shapes and correctly identifies shapes hidden behind a screen.

Katie points out Pictures that are the same or different.

Katie is able to match a variety of real sounds with the corresponding picture and many distracter pictures present.

Katie has enjoyed sensory box activities and creating works of art with glue and paint but she does not tolerate getting messy hands.

Self Help

Katie is an active participant in her self-help tasks and is working towards independence. She uses a spoon and fork to eat meals, undresses and dresses herself with minor assistance, and is able to take care of her own toileting needs, including using toilet paper, and washing and drying hands.

Diary of Katie's First Two Years-

Katie's Story- The first Year - 2001

January 3rd 2001; I came into the world Finally weighing 6 lbs 13 oz! I had my mom in and out of labour for 4 days when they induced her to help get me out. My first three sisters all just popped out, I chose to give my mom grief:). My mom jokes with people that I was too lazy to be born and wonders why I was so active inside. My right eye seemed to be closed for the first couple of days, this concerned my mom but she was told that "this sometimes happens" and that all  
I spent my first few months asleep. Whenever I was moved I would grunt alot like it was such hard work for me. Eating was alot of work for me, I would always fall asleep. Mom had a hard time trying to keep me awake to feed me and she didn't think it felt right nursing me on the right side. Everyone had to be careful burping me as I jolted eveytime my back was tapped in the slightest way. 
I use to love to lay on my stomache as this was the only way I could suck my thumb. 
March 2nd; I went for my second month check up, the Doctor realized that I had a blood ball in my neck and torticollis, possibly due to my neck being ripped at birth. I leaned pretty bad to the left because of my torticollis (as you can see in the picture of me in my blue bouncy chair), but the Doctor said that with a couple of sessions of therapy I would be good in no time........and he was right. But......the therapist I had was not very nice to me. April 4th I had my first session at the clinic, the therapist seemed to be handling me roughly and my mom complained to her but the therapist said it had to be that way or else I would not get better. I was left with some red marks on me from her fingers but they went away within a couple of hours. My second session was April 10th and the therapist wanted to hang me upside down for therapy, my mom would not let her. I was handled more roughly and the therapist again told my mom it had to be that way, I had red finger print marks on me from her again and they were still there when I went to bed that night 8 hours later. I cried alot these few weeks. My mom worked hard on my homework therapy and when we went on April 18th the therapist could not tell which side my torticollis was on! But again she wanted to hang me upside down, and again she handled me roughly so that I had red finger print marks on me still when I went to bed that night 10 hours later. Also this time.......she had rolled in a big dirty ball and with me stripped down she put me onto that cold ball. My mom made her put a blanket between me and that dirty ball. I was crying so hard but the therapist kept rolling me on the ball. The therapist wanted my mom to bring me back but my mom promised to never take me there again! 
March 29th; I now weigh 12lbs, 9.5ozs. 
Life got alot better after I recovered from all of that therapy and as you can see in the other pictures, I got straight! I was most content to be just left alone although I have always liked to have my mom close by. I didn't like to lay on my stomache anymore but I certainly loved to lay on my back and twirl my hands and feet, it is my favorite past time. Sometimes I would get really cranky and my mom would try to soothe me by rocking or cuddling but I would just scream harder, finally mom figured out that when I got this way I just wanted to go to bed and be left alone. I loved to be held in a standing position, everyone thought that I would walk young. Loud noises and sudden movements seem to frighten me more than the average baby. Around 5 months of age I was able to sit if I was propped. My mom was a little concerned that I never held on when she carried me, I also never put my arms out for "pick up", but I did let her know when I wanted up - the easy way.......with a look! When I was in for my 10th month check up, my Doctor showed concern that I was not doing enough. My mom was not worried, she thought that I was just happy, lazy and content. My Doctor wanted me to go to the hospital for a Developemental assessment 
May 24th; I now weigh 14lbs, 2ozs. and my head is at 17.6 inches. 
My bed is my favorite place, anytime I get cranky my mom just has to put me in bed and I am as good as can be. 
Peek-A-Boo Is my favorite game 
I am by times quite happy to sit and play 
And I loved just to lay around! UNTIL............... 
I turned 11 months old, then I started to roll. I was tricked into this....my favorite thing in the whole world is my blankie and mom would keep it "just out of reach", but I learned that I could get anywheres rolling. Look out world cause here I come, I steam roll everything. My sister calls me the steam roller! 
I do have a large fear of strangers, any type of stranger . I don't like going shopping with mom because someone will always talk to me and make me afraid. My mom will ask people not to talk to me but some people will just say......"oh all babies love me" and they will talk to me anyways. I wish they would not. 
Well I turned one year old now and weigh 19lbs, I love to finger feed myself and I have for quite awhile. I like to show my independance with my food and I have refused a spoon for quite some time. My physical abilities are that I can STEAM ROLL anything just about, and if I am put into sitting I can sit for quite awhile. I have waved bye a couple of times but I prefer not to. And I have Held onto mom a couple of times when she carries me but I am not consistant with that. Look at me with this fluffy white icing.....

Katie - The Second Year - 2002

On January 16th, 2002 I went to the hospital for my assessment. It was a hard day with four strangers looking at me. I appeared to be quite healthy but there was some concern over the growth of my head. I am small with my body being in the lower percentile, but my head is in the highest percentile. They discussed for me to have a CT head scan to rule out any problems. I also found out that my fine motor skills were pretty good, but my gross motor skills were equal to a 6 month old baby. They said that I would have to have therapy and my mom did not want to put me through that again! 
The hospital therapist seemed very nice, kind and gentle so mom agreed to bring me in on January 24th. There was alot of talk that day as mom tried to figure out what low tone was all about. We were upset to hear that I would be transferred over to that clinic......that same place were I had therapy for my neck. The hospital therapist wondered why we should be upset over that so my mom told her how cruel therapy was over there. We found out what happened at the Clinic was very wrong, I was mistreated by that therapist. The hospital therapist gave my mom some great ideas on how to get me moving. The one idea involving the use of a small stool seemed to work wonders for me and by the end of the week I had pulled myself to stand from sitting on the stool. Mom thought that I would be "fixed" in no time, but I am really bothered by sideway exercises and I do not like to have my hands touched at all. 
February 6th I had to go for my Head Scan, since you have to be so very still for those I was given a mild sedative. The results came back pretty quick and medically there is nothing wrong with me that way, so I have the label of low tone, meaning weak muscles. 
February 7th was my last time to go and see the hospital therapist because I was being transfered to that clinic, we were very worried and sad but she assured us that everything would be ok and that therapist no longer worked there 
February 13th I went to the clinic for assessment and saw alot of people, I did not like the people even though they were being as nice and gentle with me as they could. I was sweating alot more than normal that day. I found out that I also had hyperflexibility in my joints. They said that I would really benefit from Occupational and Physio Therapy. I did not like the sounds of two therapists! 
Feb 14th I weigh 19lbs, 11ozs and I am 29inches tall, my head is just under 19 inches. Mid to late February I started to commando crawl, but I still prefer to roll 
My Occupational Therapist (OT) felt it would be better to visit me in the home so I could get use to her a little more easier. She did a weekly home visit from February 22nd to April 12th. It took me a few weeks before I would let her near me, but she wears some really cool necklaces that seem to win me over. 
Every time my OT came to see me she would always bring some neat toys with her like froggies, beans, a beach ball and one of my favorites "the ball drop". She always has some neat ideas and shows me alot of respect and is quite willing to back off when things get scary for me, and I get scared quite often. She gives me homework assignments and one was for me to play with whipping cream. My mom would put a blob of whipping cream on my high chair tray and I was so scared of it, I did not want to touch it at all. Mom could not understand why I was so afraid of whipping cream when I loved my birthday cake so much. My OT tried me with it one day, just a dab, and I had a pretty good time with it, mom was just giving me too much, now I eat it anytime I get near it (no mater how big the blob is)! Other therapy homework is helping me to get to know my knees better and now I am sometimes using them. Sometimes I will also put weight on my hands IF and only IF I can do it myself (I don't like to do it when some tries to make me) But mostly I prefer to use my elbows with crawling and exercises. I am pushing myself to stand from my Minnie chair and I am having alot of fun doing this. 
My New Car as well has been a great help in getting me to master the fine art of standing up  
Easter Sunday (March 31st) I got down out of sitting for the first time, I didn't really do it right.....But I did it! I am also practicing my balance with standing by being quite brave in letting go of my chair. 
I still am not getting use to my homework assignments and complain through most of them especially the sideway ones and the ones that involve my hands. I don't even like it when Mom tries to do hand over hand work with me. I prefer to just be left alone. 
There is some talk about whether or not I have Sensory Integration Dysfunction (SID), so I also have brush therapy. I don't mind the brush but I really don't like the compressions afterwards. This I guess is quite odd but maybe I do not like the pressure touch because I remember the pressure feelings from that bad therapist and I get afraid it might happen again. 
I am quite happy that my OT introduced me to the Bean Bag chair, I just love kicking back in it! 
My Bean Bag Chair has been a help in getting me use to some sideway movements and other movements, but mostly I like just to kick back and relax in it,  
April 21st Mom stood me by the couch and I started to walk along it! She does not understand why I could be walking when I can not get myself up out of laying position, but really when you "lock" your knees it does not take much muscles to walk. I am also starting to commando crawl more and roll less. 
For a little while I seem to have lost my appetite for food and all I want is milk. April 14th I was extra weak and very floppy with no get up and go (not that I have much at the best of times) I have been quite grumpy and not sleeping right. I had to go to the clinic for the first time on April 16th, I met my Physio Therapist (PT) for the first time that day as well. I did pretty good considering. My OT thought that I looked quite pale and wondered if I was low on Iron, so I went to see my doctor on April 22nd. I had my head measured again and now it has grown up and off of the chart, mom is very worried but the Doctor said it was the inside that counted and we knew it was good because of the CT Scan. The blood test was aweful, one nurse had my arm pinned down while the other drew blood (and I do not like anyone to touch my hand/arms). I think I do not like people even more now because I have to stay stuck beside my mom all the time even when we are home alone. But the test was worth it, my Iron was low so my bottles of milk have been cut back by two and I am taking an iron supplement which my mom hides in my juice I now weigh 20lbs, 2.5 ozs. 
April 30th I seem to be perking up and getting more experience as I am walking like a soldier along the couch much better, I also am using my knees even more and have crawled a few steps on knees and elbows. I am getting out of sitting better as well. I seem to be handling the compressions that go along with the brush therapy so now I am being brushed twice a day, the goal is to have me brushed every two hours. 
May7th; I have had a busy week, I started to walk along all the furniture in the living room also I crawled over my sister Nicole and later a 6 inche stool. This all seemed to exhaust me so I took a couple of days off and just laid around. I seem to be doing quite well with just seeing my OT. She did a quick assessment on my motor skills today, my fine motor skills seem to be just fine! and my gross motor skills are mixed up between the 9th month level and the 12th month (because I am such a good stander I get to slip into the 12 month level). 
May 10th; Since I am so busy with walking along the furniture Mom set up an obstacle course and I am learning to do some motor planning to get around things, my appetite has also picked up and I am really eating good 
It is hard work walking around the furniture and I am often looking to rest on my little stool 
I still do not like to use a spoon, but fingers were made first weren't they? 
May 15th; I am doing so awesome right now, all of a sudden I seem to just keep surprising everyone. I saved my best surprise and gave it to mom for mother's day on May 12th.....I sat up for the first time! It seems like there is no stopping me and I can do it all now; I am crawling on hands and Knees 5 to 6 steps at a time, pulling to stand up to the couch from the floor, putting myself in and out of sitting and even bear crawling a few steps. Since I am being so busy on my own, mom is not brushing me right now. On top of all of this.....I seem to be liking people a bit more also. 
I am "Hulking Up" in one picture here, I will never get as big and strong as Hulk Hogan but I am getting stronger! 
My PT came and saw me on May 21st when I had gone to visit my OT. Both of them were quite impressed in all that I am doing lately. The PT noticed my left foot is sticking out to the side, there is some hope that my foot may naturally fix its self with a bit of therapy but if not I may have to get a small ortheopedic insert for my shoe. I had my blood test on May 24th, it was a little easier this time and all seems to be good that way. My sisters have been sick with really BAD colds, I have it too but not that bad, I will be glad when the colds are gone because everytime one of them coughs, sneezes or blows their nose it scares me really bad and I cry for quite awhile. I have been playing quite happily in the grass and on the patio blocks I even helped mom plant new strawberry plants. I pulled the roots out of the dirty water and passed them to mom as she needed one, it was great fun!
 
Swinging is a little scary for me sometimes because of my vestibuliar dysfunction, but we are working on it! 
June 8th, I ended up getting the cold bad as well, but I have recovered now. My physical abilities seem to be that I am progressing normally now at approximately a 6 month delay. I am crawling on my hands and knees more often, I do still get tired with this and have to drop down to my belly if I am going a long distance like all the way out to the kitchen. I am walking along using the walls for support and I am getting down from standing by going onto my knees. I started to use a straw, this is really good for me since I do not have the strength to lift a cup up to my lips for a drink. There is still a long list of things that mom is waiting for me to do such as; give her a kiss, say her name, use a spoon......but she is mighty proud of all that I have done so far. My volcabulary seems a little off. I know alot of words and have said them in the past, but it seems like I forget about them. Right now I have a new word, well it is actually a phrase "there it is", and this is all that I am saying for right now. I do say it alot and use it in the right context, like everytime I find my blanket when it has been out of sight for a second. 
June 19th, BIG NEWS, mom came to get me from my nap and I was standing in my crib for the very first time! I have added to my words as well I am back to saying HI, Uh-oh, Owe and THIS and I am also shaking my head yes and no. Mom found out about this cool program called Early Childhood Intervention. With Luck I maybe able to start in the fall, (there is a long waiting list due to lack of funds for the program) but in the mean time they are going to try to match me up with a little friend just like me. Mom is hoping this will help with my stranger anxiety which seems to still be a large problem for me. I have not got use to the swing yet and I seem to get quite upset everytime mom takes me out to the park.........but we will work on that, I really enjoyed Grammas house the other day though. I am still trying to master my skills to be able to walk on my own and I am a very good crawler now, its not often that I need to drop down to my belly. For two suppers in a row I accepted some food off of a spoon, but to heck with that.......fingers are still better. I love to play with my blocks alone and for the first time, I was able to put one block on top of another. 
June 29th; Well my OT says that I am getting stronger and more confident with my body as on June 24th I took 3 unassisted steps, I am still taking steps and getting a little more brave each time. I think my OT is right about me getting stronger as I am crawling quite fast now. I am getting use to the park a bit and played some what content in the sand last time we were there until a little girl my size came too close to me, then I wanted to leave, but the girl left and mom calmed me down so we stayed a little longer. I am liking cold things now, I really enjoy ice cream sandwiches and am finally accepting my afternoon bottle without it having to be warmed. I fell in love with an old rubber whale that use to be my sisters and now I have to lug that around with my blankie, I am sure it gives me a good work out as it is kind of heavy. We started brush therapy again for just one time a day and I seem to be liking it better than I did before. 
I had been visiting my OT at the clinic weekly,  and my PT checked in on me once a month.  I am very thankful for them as they help me to get stronger.

July 3rd, 2002: I have turned 18 months old today. My physical abilities have really come along way, I can get in and out of most positions without too much problems. I am an excellent crawler and never really seem to drop down to my belly anymore. I even crawled all the way up the stairs the other day for the first time, two times in a row, mom now keeps them blocked off but lets me crawl up for my bath. I am quite close to walking alone and still continue to be brave in my steps, I have taken up to 5 unassisted steps at one time. I also have started "crashing" into my bean bag by myself, I stand up beside it and fall into it. I still am having problems with strangers, but as long as mom has a good hold on me I can cope with them at a distance. I did really awesome at the park yesterday, I crawled in the sand (over to mom of corse) and I went down the little slide SLOWLY twice with moms help of corse and I even enjoyed it in the swing for about 15 minutes. I also allowed my OT to do some hand over hand work with me yesterday.. 
July 6th: I am sleeping most of today away as yesterday was pretty rough. I went to see the health nurse for my 18 month needles, one in each arm. I certainly did not like the nurse looking at me and talking to me so I screamed through the whole visit (Mom realized that I am actually really good for my OT). My measurements are; weight; 20pounds 15 oz (9.51kg), Length; 30 1/4 inches (74cm) and head; 20.2 inches (51cm). My height and weight are dropping on my curve but my head is still on the rise. I don't know how accurate any of my measurements would be from yesterday as I was fighting really hard. But for some better news I am able to walk from the chair to the sofa, and when I do fall I get right up and walk again 
 
July 11th; I am walking all around the house now. I do prefer to crawl though if I want to get somewhere fast as I am very weak, unsteady and slow in my steps. I am really enjoying the swing at the park but my weakness certainly shows when I have been in it for a little while, I get slouching quite low and my head starts to bang against the side. I was so in love with my sisters old rubber whale, but the other day my pet ferret got ahold of it and now there are pieces of rubber hanging off of it. Mom does not think it is safe for me anymore so last night we went shopping to find me a new love. The one store we went in had some fans in the ceiling, it was very scary so we had to leave right away. After a few more stores of looking at tons of things, I found my new love; a Ty Beanie Baby Bobcat and I do not want to let go of it. I even kissed my "kitty". I can't pucker up yet but I held my kitty up to my mouth and made the kissing sound, and here Mom was hoping to get the first kiss! I am preferring to play even more by myself, I do not like it when my sisters or mom interfers with my play at most times, so mom is getting kinda concerned about how I will be for July 22nd, thats when I have a chance to meet some other kids like me. 
July 19th; I am not having a very good summer, for one thing it has been too hot and then I started to get sick on the 14th. Mom was real worried on the 15th since I continued to have severe diarrhea, I was not eating and I would barely drink. So I saw my doctor that day. He dxed me with "summer flu" and with the heat I also was suffering dehydration. I had to go on a strict diet of ONLY Pedialyte for 24 hours and then I would be allowed solids again but no milk for 4 days, it was cruel, I love my bottle of milk! I did fight hard with screaming and tantrums hoping to win a bottle of milk but I lost every fight. I was given a bottle today........and then I was sooo happy. I have not been to the park since I turned sick but mom says if all is good tommorrow we will go there. I am working on regaining my strength from my sickness and I am getting to be a better walker.  
 July 23rd; Yesterday I went and met a little girl and a little boy much like myself through the Early Intervention Program. Although I preferred to hang out mostly with mom and my sisters I did do a little bit of interaction.I laughed at the boy when he was in the box of balls and I took a stuffed kitty from the little girl, maybe that was not nice interaction but it was some! Mom was pretty proud of me that I did mingle a bit. 
August 4th; Lots of good things are going on right now, On July 29th I saw my OT and PT, they were both very impressed with my walking and so I was given the rest of the summer off. I seemed to get along pretty good with my OT that day and even crawled across the room with her. I still am having some transition problems though such as when I settle to play I get very upset if something is moved. Whether I am expected to move or even a movement of a toy, it really bothers me, so everyone is going to try to work on WARNING me if there is going to be a change before the change happens, this is to see if I can adjust to changes more easily. August 1st, I went to the Museum, there are alot of really nice animals there and I so enjoyed it. I liked staying in the room that had the bears in hybernation, they were my favorite. While I was at the Museum a strange lady talked to me and I did not get too upset that I needed to scream, but I did say "Uh Oh" and slapped her, so she left. I exhausted myself at the museum and spent the next couple of days falling down alot more than normal so I have some bruises on my head. I am saying "Mom" now. I love the park and yell with joy everytime we pull up to it. It is even extra fun when I see a dog there. I am able to sit up and drink now and my Kitty is still my very favorite thing, next to my blankie of corse. I share my blocks with my kitty and I also tried to share my juice with him the other day. I am getting to be a very good walker although I can not walk much at all when I have my little shoes on, it seems that they are too heavy even though they are lightwieght shoes.  
August 18th; I now have adjusted to my shoes and look forward to getting them on because I then know I am going out. I like going to the museum and the park very much. I love animals, especially kittens. I have a few stuffed kittens that I love to carry around with me, sit and talk to them and give them lots of hugs and kisses. I can even say "mew." I also have a couple of dogs that I like o.k. and do say "arf" as well. And I am also doing chores, whenever someone is out in the kitchen by the sink I look to see if there are any dirty dishes around that I can reach and then I take them out to the kitchen 
August 25th; You will never guess what I have! I have the most amazing thing in the whole wide world! All I could do all day is point to it and seriously say "oooooooohhhhhhhhhhhhh!", it is soooooooo incredible! And then I was so excited to see that my mommy had one too, I think that Mommy and I are the two luckiest people in the entire world to have these things that she calls belly buttons! 
September 3rd; I am pleased to annouce that I still have my belly button, I check several times a day just to be sure. I was upset one day that I had lost it, but it was just that my pants were a little higher than normal. I have a big day in two more sleeps, I see my OT and then I have my clinic review and in the afternoon I have my first play group time with other little kids like me. Mom was filling out my clinic review form this morning and is so happy that I have come along ways. I am interacting more with the family, I am sort of o.k. with strangers IF they ignore me and allow me to make the first move. I am starting to color, my words are coming along good, I am trying to use a spoon now and do show interest in it. I can drink out of a glass without a lid, I am so big now that I do not take a baby bottle anymore. I even like to get down on the ground to walk at the park and I sometimes hold mom's hand for a little bit. There is one thing that mom is worried about, like it seems at least once a day my left leg falls out from underneath me and I fall down crying, it does not seem to make a difference if I am walking or standing, it still happens. I also can not crawl down stairs yet, but that is o.k. as long as I stand and scream someone comes to rescue me. 
September 16th; Sorry I am late with my update but I think I should share my clinic Review of Sept 5th, so here it is;
I am now 19 months old and I did pretty good at my meeting!;
P.T. Report; -walking independently, -balance and endurance continue to improve, -movements are well graded and controlled -becoming more accepting of trying new activities, -generalized hypermobility and hypontonia are having less impact on movement than previously, -No obvious physical reason for left leg to be giving out. Possible cause fatigue 
P.T. Action Plan; -Continue to monitor through OT and review upon request, -Monitor Foot Posture, may need footplates in future.
O.T. Report:-Markedly improved, at near age level of 18-19 months consistently, -Sensory issues reducing significantly, only with stress of new surroundings or transitions is noted.
O.T. Action Plan; -review every six weeks to monitor skill developement and sensory responses.
Pediatrician did not give a report but wants me to see a SLP and a doctor to have my eyes checked.

My first playgroup was on the 5th as well and I did pretty good, Mom was quite proud of me. One worker, I really LIKED her and spent the time following her around. She managed to get me into the balls to play for just a wee bit. It was a great playgroup filled with boys that were quite active running up and down the slides, racing around in the little cars/trucks and they were all over the place doing very active boy things. They were all at least twice the size of me so I did not look out of place that I was poking and stumbling around, and it was VERY obvious that I was not near as strong or active as these boys were. I thought all the boys were a year or two older than me but then I found out the one boy was 2 months younger than me. I see I have alot of growing to do and alot of strength to build. I did learn watching the boys though because after playgroup, well I came home and was pushing my little push car around for the first time. I also crawled down the stairs for the very first time!
 
September 25th; I had to see my eye doctor today to see if I might have any problems with my sight, but everything is perfect in that department as I have great vision. I have become quite sensitive to movements and people again. So I have not been to play group, but do hope to get there tommorrow for a try. I was quite scared of a 9 month old boy in the doctors office today, but I guess playgroup might be a good place for me to start getting use to people again.

October 1st; I have some good news and some sad news. The good news, my friend at the early Intervention Playgroup and Mom helped me to learn how to go down a little slide last Thursday all by myself. I seemed to be afraid of the rest of the people that were there that day, but I was o.k. when they kept their distance. On friday I tried to take my very first step down the stairs and my foot really twisted out causing me to fall. Since i could not stand without crying I had to go see a doctor and I had "maybe" a mild sprain, but I am doing much better now, I don't think I will be trying the stairs again until my ankles get much stronger..

October 10th; I had a good day today at play group last week I was somewhat upset, I think Mom and my friend "did it wrong" that day and tried to get me to the little slide too quickly. But today was lots of fun as long as the other people kept their distance from mom, my friend and me, and I even blew my first kiss to my friend. I went up the big slide and hung out in the top for awhile by myself with mom guarding one area and my friend guarding the other to make sure I would not fall. I could see lots of things way up there. My knees seem to be hyper-extending more than ever, my mom would like for me to see my PT but there is a strike on, so we have to wait.(It is day 23 of the strike)

October 18th; Last night I gave my mom 4 kisses, she was so happy that she smiled the whole evening. The health Care strike finally ended here after 29 days, so I get to see my OT and PT on the 28th of this month.

November 1st; I am sick with a bad head cold, so I did not get to show off my halloween costume yesterday at playgroup. I did not sleep very much last night as it is really hard to try and suck my thumb with my nose stuffed up. I did see my OT and PT on the 28th and mom thinks I did really awesome there playing with my OT. My PT gave me a small brace to try out on my hyper extending knees but she thought that maybe my boots might help me better. So mom has been keeping my boots on around the house and I am not hyper-extending much at all, she feels if I had boots with more support I would do even better. With my boots on I have been riding my whale and I have never rode my whale before! I also seem to walk more quickly in them. So a good pair of boots with some support for my weak ankles just might be a "cure" for some of my little problems! Mom is anxiously awaiting for more kisses, but I never want to give them anymore, that one day was enough for me for now. 
 
December 2002; As it is a busy month for everyone it was for me too. I met my ECIP worker (turns out to be a lady I had met in the summer as well and at playgroup once before), I think things will be o.k. with her but I was very clingy with Mommy though even after she left my house. I was invited to the Shriners Christmas party, there was clowns and Santa, Santa even gave me a present  but he was very scary, I did like the gift even though it was a cute polar bear.My favorite part of the party was when the Shriners played their instruments to some of my favorite songs like..... Mickey Mouse March and When you wish upon a star.A couple of days after the party I came down with a very bad cold, I coughed like a weak little puppy may bark, and i got very weak, so weak that on Christmas morning I could not opened my presents at all.. 
But I did manage to get strong enough to rip some wrapping paper on my Birthday !
 
 
I thank you for taking the time to read about me, if you have any questions or comments please be sure to e-mail my mom nadine1_2004@yahoo.ca
Thank you with love
Katie

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