She had an extensive measurement and evaluation done there and the findings there were , strawberry hemangioma, brachycephaly , bilateral epicanthal folds, low-set ears  with prominate pinnae , minimal retroganthia and on her prenatal ultrasounds to have a two vesseled cord ,right hand anomoly with absent right thumb , hypoplastic distal philanges, and overall smallness of the right forearm.

Her lower extremities are normal , except for hypotonia , and hypoplastic nails were noted and a small umbilical hernia .

She was also born with an imperforate anus and possible vaginal fistula and her xrays were consistent with 13 ribs on the right thoracic hemivertebrae.

 

August 10, 2006 - Maggie was two days old and underwent anoplasty for her imperforate anus .

 

August 15, 2006  - 1 week check up and Maggie looked very good and healthy :>)

 

September 1, 2006- went to Shriner's to get x-ray for Maggie's back and to talk about her hand and arm.  

 

September  19, 2006- Went to see the genetics team to learn more about VACTERL , and also for them to learn more about it as well. There is very little know n about what causes VACTERL so they were very happy to get to met us .

Maggie that day weighted 10pounds . She was in the 50th percentile in weight , height and head circumference .  There they found an audible murmur dure to a Grade II/VI soft systolic murmur or a PFO with mild left to right flow .

We also went to see the pediatric surgeon that day and everything looked good with her bottom and we were instructed on how to do the daily dialations to her bottom twice a day . Not fun :<(

 

October 12, 2006-  Maggie did very well today.  She measured in at 10lbs 7 oz and is 22 1/2 inches long . Which leaves her in the 40th percentile in weight and height for babies her age .  I also talked to her pediatrician about some reflux issues but as long as she is gaining weight she is doing fine . Maggie also had 3 shots today which has left her pretty sleepy .  Her doctor also is going to schedule in a visit with the pediatric cardiologist because of the heart murmur.

 

October 17, 2006-  Went to Pittsburgh today for Maggie's follow up with her Pediatric Surgeon .  He said that her bottom is healing up nicely and that hopefully we will be finished with her dialations here soon . He would like to get it done by the time she is 4 months that way we don't have to deal with any behavoral problems . This ways its done before she knows what is going on .

That sounds good to me too :>)

 

October 25th ,2006 -  Went to Shriners today . This is one place we actually like to go to . The staff ,  and doctors there are wonderful .  Maggie weighed in at 11lbs 4 oz today ( but may be a tiny bit less since she had clothes on ) . We saw Dr. Hood and he said that Maggie doesn't have a radius. Now I really feel confused because we were told she had both bones in her arm. But I guess we'll find out more the older she gets.  She has what is called a clubbed hand .. sort of like a clubbed foot  .  He said that she had good movement with her fingers and wrist so that will help her later on down the road. The occupational therapist  fit her for a splint to keep her arm from turning in more .  We picked a purple one :>)

There won't be any talk of surgery yet until she is at least 18 months old . Our next visit with Shriners won't be until December .

 

November 2, 2006- things went well for Maggie today at the cardiologist . She weighed 10lbs 8 oz ( which was accurate because we took off her clothes). They did her echocardiogram and he said that her heart structure looked very good . He did find a "hole in the heart " . He said this is called ASD -atrial septal defect.  It was a little bit large which had him slightly concerned. The doctor does think that it might close on its own because he said he saw a little bit of tissue near it . But he's not 100% sure on that . If it does close that will be wonderful. If not he said that she will need surgery to repair it . That there were two ways to repair it with traditional surgery or catherization . But he said the opening was up too high for catherization so if it doesn't close on its own she would need surgery on it . The doctor also said it is 5 mm wide .

Other then that we are going to think positive that it WILL close on its own . We will follow up with Dr. Freeman in a year .

 

November 21, 2006- Went to see Dr. Burns for follow up for Maggie's bottom .  We have now worked our way to the number 12 dialator . Her bottom is healing nicely . Dr. Burns said that there was just a snug spot in her rectum and that we may have to go to a number 13 dialator . Maggie weighed in at 10lbs 14 oz.  We won't be going to Pittsburgh until January  23, 2007 . So that will be a nice break for a month .

 

December 4, 2006-  Today's appoinment was at Shriners to see Dr. Khoury the back doctor. All is stable right now with her back which is great news. Dr. Khoury did see a couple of pedicles in the cervicle area of her back . But wasn't really sure if he saw one or two there because everuthing was just too small yet to tell . So we won't be going back to Shriners for her bavk until she is a year old., or if something else comes up. We also talked about her being checked for a tethered cord . He said for us to go and see Dr. Shobert first to have things checked out with her kidneys and bladder and if she isn't emptying her bladder , has reflux, or isn't meeting developmental milestones he will set up for her to have an MRI done to check for a tethered cord then.

 

December 14,2006 - Went for hand appointment today. Dr. Hood wasn't in . So they just took an xray and a look at her hand. Things look good for now. We have another appointment Feb 14,2006.

 

Dec 23,2006- Maggie was hospitalized for dehydration and failure to thrive. Here she has grade 2/3 kidney reflux on the left side and her right ureter is severley dialated. Her right kidney is smaller then the other and the right side drains slower . Maggie had several tests done ,VCUG which showed the grade 2/3 reflux, a renal scan which showed her left kidney is larger then the right and that the right side drains slower . Rectal barium enema and vaginogram to rule out an extra ureter , which there isn't , and a CT scan which didn't give the urologist what she is looking for. Maggie may have a possible ectopic ureter . We won't be sure until she puts Maggie under and does a cystoscopy to look and see what is going on . That won't be done for a month or so . The urologist wants Maggie to recouperate from being sick.  We had spent her first Christmas in the hospital and spent a total of 10 days at St. Vincents.

Maggie came in weighing 10lbs 12 oz and left weighing 12lbs 6 oz. Now here's to keeping her weight up .

 

January 17, 2007- Met with Dr. Schober today . We finally had a good chance to talk about what was going on with Maggie . First things first, her urine came out clear and good .

Next we talked about kindey function . She has 80% function in the left kindey and 20% in the right . She said chances were that those 'cysts' detected in her sono before birth was really hydronephrosis .  Maggie will never regain any more function in the right kindey . It will always stay at 20% or eventually will fail and she will end up with one kindey .  She has VUR reflux in the left side , which is a grade 2/3 and is expected to grow out of it .  The right side Dr. Schober just isn't sure what is going on with it yet. She will have to go in and scope and find out why she has a dialated right ureter . She is thinking that its an ectopic ureter that has gone off to the rectum.

She wants Maggie to recouperate and to gain and grow a little before scoping her .  Until then she is on amoxocillin  and we go in and have a urine check every time she has a fever . 

 

January 23,2007- Follow up with Dr. Burns . Things are looking good as far as Maggie's healing of her bottom.  We did have to go to a number 13 dialator though , which I hated to hear. It never gets any easier to do this to my baby girl . It just seems so big for such a little bottom . But nonetheless its the right size for her age .  Maggie doesn't care for it too much either . I don't blame her. 

We also "discussed" with Dr. Burns about the urological issues that Maggie has . He sort of had that " Oh , huh ?" attitude. Like it came to him as a HUGE shock.

To me if he would of checked things out more , maybe Maggie would have more kindey function right now in her kindeys.

I am hoping that maybe we can go to Cincinnati instead since they have very nice colorectal center and they specialize in kids with VACTERL . 

Anyways hopefully this #13 dialator will be our last . But who knows.

 

January 26,2007- Maggie is sick with a virus . She had a 101.2 temp this morning which ment we had to get a urine specimen. Well with Dr. Schober over in Europe her office was closed. So off to the pediatrician we went. She checked her ears, throat , nose , belly and came to the conclusion that its a virus. Besides Maggie had some green snot coming out of her nose . They checked the urine and it was clear . She is eating well which is a good sign, and weighs in at 13lbs .

 

Feburary 15,2007-  Today was Maggie's 6 month well baby checkup. Well I thought things would turn out fine but they did't . She weighed in at a whopping 13lbs 1 oz. So in about 3 weeks she has gained 1 ounce , and she hasn't grown again in height either. Still at 24 1/2 inches. Which this puts her in the 5th percentile for weight , 10th for height and 40th for her head.

  She also still had the ear infection from 3 weeks ago . Either it never cleared up or it came back as a different one so Dr. Zomcik has put her on Omnicef. Luckily this tastes better then the Augmentin so she isn't fighting me as much . Still likes to spit it out her mouth though . 

The one thing I do know though is I feel SOOO very frustrated with this all. No one can seem to figure out what is going on with my baby . What I wouldn't do for a good growth spurt or something just to go right for her .

She still has this mystery rash too. I guess I'm not going to worry too much about it . I've had 6 doctors look at it and no one is concerned about it.

 

February 23,2007-  Went to see Dr. Schober today for a follow up visit . Maggie's urine came out clean which was great. She couldn't of been more happier with that .  We are going to wait for the MRI and see how that turns out to determine wether Maggie will need any other testing done on her bladder. So we see Dr. Schober in 2 months :>)

 

March 5, 2007-  Maggie's appointment went well with Dr. Sala . We were lucky to get the appointment moved up due to someone canceling theirs .  Maggie was in such a good mood that day and was such a brave girl . Not once did she cry .

They put a lot of different drops in her eyes for different things . She passed everyone of them. They will keep an eye on her birth mark ( port wine stain ) though . I guess the nerves that are in the birth mark are connected to the high which puts her at risk for glacoma .  Other then that she has a blocked tear duct that I am working hard to get it to resolve itself . Because otherwise they will have to go and "unclog" it themselves and at her age they don' t use anethesia . Bascially they papoose them and then use this probe . It just sounds so barbaric .

 

March 21,2007-  Today we went in for Maggie's weight check. She gained almost 2 pounds and was 15lbs 9 ounces. Its funny because everytime Maggie gains not only do I get happy but even the nurses in the office . The nurse said that she finally made it to the growth curve on the chart. Hope this growth pattern stays this way .

 

April 13, 2007- Saw Dr. Schober today .  Maggie's urine looked great . I shared with Dr. Schober the letter we recieved from Children's Hospital. How it said that the hospital knew about Maggie's dialated ureter. But failed to communicate it and therefore because of their lack of communication she didnot get the treatment and follow up she needed .   Dr. Schober said she was VERY worried in the beginning but is less so since Maggie hasn't had a UTI yet.  But she says she is still worried about what is going on in there . So in June she has us coming in for a renal -bladder sono to see how things are growing in there.

 

April 17 ,2007 - Saw Dr. Burns . Everything looked good . Maggie does have a mucosal prolapse that will have to be fixed in the future. But her dialation was a success and we no longer have to do it . Horray !   Now we just have the fun of keeping her from becoming constipated .  We don't go back until October .

 

April 25,2007- Saw Dr. Hood . Maggie has a hypoplastic left thumb we learned today .  That is why she kept it in for so long and began using her left hand like her right .  After that it was time to talk surgery for her thumb. I knew this day was coming but I just felt like I was hit with a wall with it . All of a sudden we were filling out paperwork , and getting a tour of Shriners and watching a PowerPoint slide show about what to expect the day of the surgery .  It was all very overwhelming . The date is attentively set for July 25th.

 

April 26th -  Went to see Dr. Zomcik due to Maggie choking on liquids.  This is of concern to me and I know it isn't right . Maggie isn't drinking or taking in solids again very well and we need to get to the bottom of this  . So she looked in her mouth and she is tongue tied but we're not so sure if this is what is causing it or not .  So we are going to have a swallow study done next week to find out what is going on .

Maggie weighed in at 16lbs 2 ounces and was 25 quarter inches long .  This puts her in the 15th percentile for weight and 10th for height .

 

May 21,2007-  Saw Dr. Khoury at Shriners today . This was our last visit with him and he decided to go ahead and get the MRI set up for Maggie since we have found the urological issues going on . Both he and Dr. Schober would like this ruled out . Me too .  We are set to have it done June 20th at Pittsburgh Children's hospital at 10 am ,.,,, oh fun . This will be a sedated MRI so Maggie will not be allowed to have any food after 4 am and any liquids like water or Pedialyte after 8 am .  So we get the fun trip of a cranky , hungry, not liking her car seat 2 1/2 hr trip .  But it must be done to make sure everything is alright too .

 

May 23 ,2007 - Today was Maggie's cardiologist appointment. Though it was a bit early .  We had to get her pre surgery clearance done so she can have her hand surgery in July and her frenectomy done for her tongue tie in June .  Her ASD is still there but Dr. Freeman said all was good at the moment. He said even if it happens to still be there that there isn't much to be done until she is 3 any ways . So we still have to cross our fingers and pray it does , otherwise its open heart surgery .

 

May 24, 2007 -  Today was Maggie's 9 month well baby check up . She weighed in at 16 lbs and is 26 inches tall . This puts her at the 5th percentile for weight and height . But the good part is her head is growing and is at the 60th percentile .  She has not been wanting to eat her baby food and is taking in only liquids at the moment . Hopefully this will change after her frenectomy .

 

June 4,2007 -  Maggie had her frenuloplasty done today . She came out of like a champ . It was a very quick procedure . Had to at least of been 5 minutes if that . Dr. Steeler said that her tongue was really bound down . So hopefully this will help . Which I am praying it will .

 

June 11,2007 - Went for renal bladder sono today to check on Maggie's kidneys. Her right kidney is about a centimeter and a half smaller then her left. Doesn't sound like much but it looked like a big difference to me . But all is well. No UTI's and we don't have to go back until September .

 

June 18,2007- went to the ENT for follow up . All was well with Maggie's tongue. No bleeding , infection , nothing . She healed up very nicely .

 

June 20,2007-  Maggie was scheduled for an MRI to check for a tethered cord . She did a great job . They sedated her with chloral hydrate and she slept the whole hour it took . As soon as they slid her out she opened her eyes right up .  On June 25th we recieved a call and found Maggie does indeed have a tethered spinal cord . So we will be seeing a neurologist for this in July .

 

July 12,2007- Went to see the neurosurgeon today . We found out that Maggie does indeed have a tethered spinal cord and also two syrinx , one that goes from her C4-T1 and another that starts at T5/6 to the bottom of her spine , those will be monitored.  But the tethered cord will require surgery with a 3 day stay. We maybe coming home having to cath her ( which I'm not looking forward to doing ) and this may or maynot be temporary . I also learned from reading the report on her CD that Maggie has two fused vertebrae in her neck , her C4 and C5 and has a hemivertebrae in her C7 . Then she also has 3 hemivertebra in her Thorasic area , and then fused vertebrae in her sacrum from S2, S3 and S4 , and her tailbone is shortened as well .  What this all means yet I'm not sure .

 

July 19th ,2007 - went to see the GI in Wexford . He doesn't think Maggie's issues are GI related and we really didn't get an answer as to why Maggie coughs on think liquids.  He did diagnose her with milk allergy . So we will be starting with a formula called Neocate . They drew blood to check for milk , egg, soy and wheat and did a metabolic ,and CBC draw and a few other things . HE is curious as to why the slow growth though , she weighed 16lbs 12 ounces and she is almost a year old , and was 26 inches tall .  He wanted a calorie count too . So we go see the dietician on July 26th .

 

July 24,2007 - Dr. Keljoe called and let us know that Maggie is allergic from moderate to high with milk , soy , eggs and wheat. To all of it . So he wants to do some extensive allergy testing to see what else she is allergic to .  He also said that her liver enzymes are elevated. To like 65 . Nothing to worry about at the moment but he wants to find out why that is .  We see the dietician tomorrow so hopefully she will let us know what we can and cannot give Maggie , plus he wants her started on the Neocate ASAP . This will be interesting since Maggie doesn't like to drink anything really .

 

July 26, 2007 - Went to see the dietician today to learn about what foods Maggie can and cannot have to eat.  They want Maggie to start with the Neocate and get most of her calories from this  , we are to avoid anything with milk , eggs, wheat and soy it in . This is a long list of stuff because there are other names for milk , eggs , wheat and soy . 

 

August 2, 2007 - Spent a day at the ER and was admitted in the hospital . Maggie was dehydrated because she had an ear infection and sore throat which caught us by surprise . She had no fever whatsoever .  So Maggie was pumped up with IV fluids and sent home with an antibiotic .

 

August 8,2007 - Miss Maggie turned 1 year old . I can't believe time has gone by so fast . My baby is growing up .

 

August 9 ,2007 - Went for Maggie's 1 year check up . Her weight was 16lbs 11 ounces , her height is 27 inches long . This puts her below the 3rd percentile in weight so she is off the charts again , and she is in the 10th percentile in height . She also had three baby shots today .  We discussed her upcoming tethered cord surgery as well .

 

August 11,1007 - spent time once again in the hospital for dehydration ,, Maggie was vomitting , not eating or drinking again and had some diarreaha .  On August 12th her IV cath kinked and it inflitrated her right hand . Her left arm was used to get blood so it was already accessed . It took 3 people to try to restart her IV but they were all unsucessful . So we thougth we would try to see if she could hold her fluids down . Which she did . They let us come home August 12th. On August 13th we found out Maggie didn't have the flu like we originally thought but has a nasty bug called C-Difficile .  Not fun at all . Just EVIL stuff . Maggie was then put on Flagyl to get the intestinal flora back into check . I'm looking into getting probiotics for after she is finished with the Flagyl so that we never have to go through this again .

 

August 14,2007- tethered cord surgery cancelled due to the c-diff . Rescheduled for September 11th .

 

Septmber  20,2007- Maggie weighed in at 16lbs 11 ounces

 

September  25, 2007 -  Went to see Dr. Schober and let her know that all her urological issues are due to her tethered cord . So the plan is to have the surgery and then when Maggie is healed to have the VCUG done and we'll go from there .

 

October 9, 2007 - Maggie had her tethered cord surgery . Boy the first 48 hrs was the hardest . She woke up from anasethia with a croupy cough and I'm not sure why that was .  She was in terrible pain and I couldn't pick her up to comfort her . That was the hardest part of it all .  We stayed for 3 days and she did well and we went home . Of course on our way home she begain to strain terrible and I'm not sure why this was . It is an issue with the front or back .. constipation or urology issues . Hopefully we can figure this out .

 

October 30, 2007 - Ear infection . The right ear was mighty nasty the ER doc said and had an infection in her other , so a double ear infection . We maybe talking to her pediatrician to see if ear tubes would be a good idea since she has had quite a few of them .  We've elimintated any allergens in her diet since Maggie has allergies to milk , eggs, wheat , soy , peanut and Lord knows what else .  So we can't blame this . This is really her second ear infection in two months . She also had one in August .

 

November 5, 2007 - Went to meet and say good bye to our second orthopedic doctor . Dr. Sanders. What a wonderful , and kind doctor he is . I liked him from the very moment I shook hands with him .  Maggie's spine looks great . He said there isn't anything significant to him at the moment so we will just follow up in a year . With who or wear we don't know because the Orthopedic docs here in Erie are gone and we currently have a shortage of orthopedic docs so Shriners isn't sure if they will be able to replace both Dr. Khoury and Dr. Sanders now . Which is very sad .

-update with the xray they took they noticed her spleen was enlarged. Later found out Maggie was fighting a nasty ear infection . Which cleared up .

 

November 12,2007 - 15 month well baby check up . Miss Maggie's weight really didn't budge much and she is at 18lbs 1 ounce . She did grow in length to 28 1/2 inches long . Had her baby shots and looked good overall . Though this did put her at 20% for length and still below the 3rd percentile in weight .

Had baby shots , which she was not happy about but did well .

 

November 13. 2007 -  Maggie had her VCUG done at Hamot today . Lets just say she did NOT like it . It took 3 people to hold her in place . Though she is small she is a strong little stinker. The nurse held her at the bottom , me at the top and another nurse on the side .  We followed up with the physician's assistant and she had said her reflux was worse but wasn't surprised as she is older and her bladder was getting bigger. So we need to follow up with a renal scan and with Dr. Schober when she gets back into town .

 

December 3. 2007 - Went to see a new GI doc for Maggie in hopes we can get somewhere with her feeding issues .  We met with Dr.Clavell and she was helpful to us and we were able to leave with a beginning plan . She upped Maggie's Prevacid , and added Pepsid to her evening routine . Also we need to have another swallow study done again , some blood work and our next option is Periactin which , this med I'm just not too crazy about the side effects it can have . I am hoping the med change does the trick for her .

 

December 4, 2007  - Met with ENT , Maggie is needing some ear tubes due to her chronic ear infections she had . Hopefully this will help . The surgery is scheduled for January 7th .

 

December 11 - Went to Hamot and registered in at 9:30 am for Maggie's renal scan . Went upstairs to pediatric floor and they gave her the IV she needed . Maggie was NOT a happy girl . She is getting to that age that she knows when that something is up when she sees a table with a pillow and if anyone whips out the rubber band they put around your arm. She instantly screams . It took two tries but they got it in .  After that we went down to Nuclear Medicine and they gave her the radioactive stuff and we went for a walk to the cafeteria where we waited for an hour , had some lunch and went back . Soon after that we went back to the room for the scan where they had to use ace bandages to wrap around her to keep her still . Poor Maggie , I'm sure she was thinking about what a stupid day she was having as she laid there and cried . But soon she fell fast asleep though which was good and she slept through the whole thing . Then after all of that mommy woke her up and made her cry again and we walked over to Dr. Schober's office where we learned that not much if anything has changed , her left was 78 : right kidney was 22 .  That she still has grade 2 reflux , which kind of confused me a bit because I was told it had gotten worse at the last visit . Anyways she changed Maggie's med to Septra , so we're done with Amoxicillin right now , and she was very happy with everything .  We will still be seeing her every 3 months .

 

January 2 ,2008 -  Went to see the allergist Dr. Aloi today . Didn't not care for him very much . But dealt with it . We talked about Maggie's allergies to milk , soy , wheat , eggs and peanut that we know of so far . He finally decided to run another RAST test ( blood test ) to see if Maggie has any allergies to anything else they can test for . He also wrote us a script for an Epipen Jr to have with us always . He also thinks she may have asthma but at this age its hard to tell because they can't participate in testing . We had brought up a few instances when Maggie had some 'breathing issues ' and he said it sounds like she could and there is nothing to tell them she won't develop it because of her allergies either . So we also have a nebulizer and albuterol should we need it as well .  January 10, 2008 , doctor called back with her test results and Maggie is highly allergic to peanut and egg . Milk , barley , wheat and oat came up on the lower end of the scale , milk being 1.05 and the wheat , barley and oat with a 1.1  . We'll have to do skin testing to confirm it .

 

January 3, 2008 - Went for Maggie's swallow study . All is well with her swallowing abilities . The speech therapist said it looked better then the last time and she is moving and swallowing her bolus much better now . We think the issues maybe not is what is going down but what is coming up .

 

January 7 ,2008 - Maggie went in for Ear tube surgery . It was another quick surgery lasting about 10 minutes if that . She came out of it like the pro that she is .  Hopefully this will help with the chronic ear infections .

 

 

January 14,2008 -  Went to our 1 month follow up with Dr.Clavell. Maggie gained 1 pound . She had gone from 18lbs 8 ounces to 19lbs 15 ounces when we saw the allergist a few weeks ago , to 19lbs 8 ounces by the time we saw Dr. C .  She said though she lost a little she considered that a 1 pound gain .  No changes in meds . Still on Prevacid and Pepsid . Still on her Elecare /Neocate formula . We discussed if we were possibly dealing with an Eosinophilic disorder and she said that she believes we maybe .  She wants to do a scope this summer to check things . Other then that we don't see her again until July .

 

Febuary 8 2008 -  Took Maggie to the ER . Even though she has the ear tubes she still had an ear infection . She had no fever with it though which this is the 2nd time that has happened .

 

February 12, 2008 - WEnt for Maggie's 18 month appointment. She weighed in at 19lbs 10 ounces so she gained 2 ounces in a month . We saw the physicians assistant and didn't care for her very much . Since she felt obligated to tell me that Maggie should be on a cup right now .  She's not ready to take all her calories from a cup ,and if they aren't going to try tube feedings they can just kiss my butt .  Everything looked good , Maggie always measured in at 29.5 inches .