So, I have become accustomed to candy coating most of what is currently going on in my life. I do this for several reasons: 1. It makes me feel better about my situation 2. Most people have no clue what it is I am talking about when I try and explain things 3. I am sick of getting the same response over and over again 4. I am tired of feeling sorry for myself and my family.
I cant candy coat things forever. It has finally gotten to me. I knew it would at some point. I was warned that keeping most of my feelings in would eventually lead me to bust and it has. My head is spinning. I am moody and to be quite honest, a bit depressed.
I almost never curse and every other word running through my head is fuck, fuck fuck.
My son is the light of my life. He is my soul. I love him more than life itself and would jump in front of bullets for him. He is what makes me want to get up in the morning. He is the reason I candy coat everything.
Who knew that when you gave birth to this little thing that appears so very perfect to you, so much could go wrong? Who knew that when you found out exactly what was wrong, it would make you feel worse and make you cry more than you ever had in your whole entire life? Who knew that 1 1/2 years after finding out your son was missing a piece of a chromosome and about 86 genes, you would still feel like shit every day and still sit crying?
I would never trade him for the world but it is getting harder and harder to mask my emotions for him so, I decided to write them all down in hopes that I might get a little relief for awhile.
I wish more people understood Connor's deletion, including myself, his doctors and people around us. I am sick and tired of people telling me "oh, I am sure he will catch up", or "well, he looks great". Yes, thank you for that but that makes me feel worse. He is not catching up and yes, I already know he looks great because he is the greatest and most handsome human being around but, he is not great. Poor guy has a tough life and never complains. I complain for him because I have NEVER had to do half the stuff he has to do and I never will have to. That is not fair.
It's not fair to wake up your son almost every day from a sound sleep to go to a three hour therapy session. It is not fair to watch your son fall OVER AND OVER again hitting his head crying in pain because he has horrible balance. It is not fair to have to strap your son into these god awful braces every night preventing him from moving his little legs to get comfortable. It's not fair that I sit here crying to the point that I cant see. It's not fair that my son is labeled as retarded and everyone else around me has these "normal" little children that can run and talk and play with toys without having to be told how to use the toy every single time. WHY? It's really not fair. What did I do?
Connor deserves SSI. He needs these benefits and/or the money to help us pay for the medical bills. I want to spit on the social security office. You have proof he is missing vital genes to live a normal life with out assistance and you still are making him go through test after test? Fuck you. He flunked your speech test, why do you need to make him go though a mental evaluation? You have the proof that the doctor labeled him as retarded (something that makes me cringe every day). Why do you need to make us go through a test to see what degree of mental retardation he is at? Don't you know that this bothers us and it's not fair? What else are you going to make this poor boy go through to possibly get the money and benefits he deserves?
I am sick and tired of my husband telling me everything will be ok. I am sure it will when I am done feeling guilty and horrible inside but you, my love, are not the person who takes him to these appointments, you are not the one who goes to every therapy session. You don't have to wake up your son to take him to PT, OT or speech. You for some reason have a fear of driving and make me, your wife, wake up and take you to work every day. When the hell do I get a fucking day off?
I cant do this anymore. I cant sit here and tell myself everything is ok. I don't want Connor in special education. I don't want Connor to wear braces. I want Connor to talk, to run, to not fall, to have a normal brain, to not see hundreds of doctors and I want those 86 genes that he is missing back. I want to know why this bothers me so much and why it bothers me when people tell me it is ok. It's not ok. You don't have to do this everyday and you don't have to feel the guilt of knowing this is not fair. You don't have to look at your son who never complains and wish that he knew another type of life.
It is not fair.
I am sorry for the rant and I am even more sorry for my profanity. I will be keeping this post up only for a few days until I feel better. The goal of this post is to help ME. The more I read it out loud the better I will feel.
Showing posts with label chromosome 21. Show all posts
Showing posts with label chromosome 21. Show all posts
Thursday, November 4, 2010
Monday, October 25, 2010
Bubble Boy...
When I found out that Connor had a chromosome deletion we had many ups and downs. We were told more than once that he had a brain disorder and he would possibly not live a full life. We were told he would have heart problems and several other disorders that were so overwhelming to think about at the time (and to be honest still are). Connor saw so many specialists (still does) that first year it was almost hard to keep track of our appointments.
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases. I cant tell you how lucky I feel to know that Connor is somewhat a miracle. He has so much going on but all in all it could be worse. I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat. I don't care if my child's brain is missing vital information and I don't care that my son has "special needs". I HAVE my son. Who can ask for more. It pains me to think of all the parents that lose their children. They are supposed to watch us pass. It should not be the other way around. I do more research then needed and have become sort of an advocate for children with Chromosome Deletions. I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies. His life is our life lesson. He has taught me patience, strength and structure.
He is by far my soul mate and my hero. Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused. I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you. I started documenting everything and to this day still do. Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling. Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor. He still prefers to lay in the tub to this day. At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger. I cant believe it hasn't fallen off yet. But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.
4 months
8 months
13 months
16 months
20 months 
24 months
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases. I cant tell you how lucky I feel to know that Connor is somewhat a miracle. He has so much going on but all in all it could be worse. I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat. I don't care if my child's brain is missing vital information and I don't care that my son has "special needs". I HAVE my son. Who can ask for more. It pains me to think of all the parents that lose their children. They are supposed to watch us pass. It should not be the other way around. I do more research then needed and have become sort of an advocate for children with Chromosome Deletions. I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies. His life is our life lesson. He has taught me patience, strength and structure.
He is by far my soul mate and my hero. Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused. I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you. I started documenting everything and to this day still do. Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling. Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor. He still prefers to lay in the tub to this day. At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger. I cant believe it hasn't fallen off yet. But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.
4 months
8 months
13 months
16 months
20 months (the fear of bubbles was beginning)
24 monthsThe last shot of Connor as "bubble boy"
Sunday, August 15, 2010
Truly one of a kind....
Yep, it is true. This kid is not only unique but a true genuine, one of a kind.
We had Con's annual genetics appointment this past Friday and everything went as well as expected. The appointments are stressful for my family because I need to make sure I have all of the questions I have gathered over the last year written down and the fact that we don't really know what they are going to say to us. I could not help thinking that they may have found something not so good when studying Connor's deletion this past year. Thank goodness that was not the case this time.
They still have yet to find another person with the same deletion as Connor making him the only one still. Kind of neat that someday Connor will be the person some doctor will be comparing their patient to if someone else ever becomes diagnosed with this particular deletion.
Good news is that there was an article released earlier this year documenting three cases of 21Q deletions (yes, Connor's deletion finally has a name). All of the three cases had similar deletions to one another but very different from Connors. Connor's deletion is the largest recorded so far missing a total of 82 genes and enzymes but even though it is the largest, we got lucky some how. Two of the three cases had very small deletions but they were missing a particular gene (IT1something or rather) that causes severe mental disabilities (I do not like the R word so I will be using the word disabilities instead). Connor's deletion literally stops right behind that gene leaving him both copies. (YAY)! He doctor did diagnose him as being mildly mentally disabled (again no R word please even though the doctor used it several times) and even though I knew that, I had a hard time hearing it from a professional. The article was really nice to know that there are some other cases out there. A 21Q deletion is extremely rare but I am still determined to find another kid out there EXACTLY like my boy. I keep looking at this article just so pleased that I have a little something to compare him to now even though it is not what I had exactly hoped for.
Apparently the first ever recorded case with a deletion similar to Connor's was in 1964. I believe these other cases from the article are more recent than that but I am not sure.
We spoke about Connor's amazing progress and finally brought up his speech which at this point is my main concern. He mentioned to us that Connor's brain is underdeveloped which we knew but it is also very narrow making it hard for him to process speech since it is done in the frontal lobe. He told us that he should talk but it is unknown as to if it will be normal like you or I or if he might have a slur or speak slightly slower. He also could not tell us when. It could be in a year or 5 years. If by chance he is still unable to talk properly when Kindergarten rolls around, there are computerized talking devices available to help him in school. This is all such good news. We will continue speech therapy and possibly ask for more. We are excited to enter him into special education pre school when he turns three. He will be able to learn so much more there and finally meet a friend or two.
We came across some health problems we will be addressing in the next few months as well. Connor will be getting an eye exam due to the shape of his lids and my concern with his peripheral vision. He will also be going to a GI doctor due to the fact that the genetics doctor has diagnosed him with PICA. I had never heard of that before and thought Connor's need to put everything in his mouth was just something he needed as a stimulation. Turns out he is not mouthing his books or his babies but he is actually eating them. That is why he rips the strings out of his babies and gnaws on the ends of his board books. His body for some strange reason is craving those things. He also eats cat food daily but we of course discourage that behavior. I find it to be so odd that your body can crave something so unappetizing. I know my mom used to eat dirt as a child and it turned out she had a very bad kidney problem and needed lots of medications. We are hoping Connor is just missing an enzyme or vitamin due to his deletion. The doctor mentioned that it could be psychological and if that was the case it would be a very, very hard habit to deal with. Lets just hope for the best and pray it is a vitamin or enzyme deficiency. I am so happy to see a GI doctor because not only will we address this PICA issue but now I can get to the bottom of his chronic constipation/diarrhea. That poor kid has never had a normal bowel. It is one extreme or the other.
Other than that, Connor looks great and has made great progress. We were told he is a very charming little boy and definitely one of a kind. They also mentioned that he is proof that Early Intervention works.
I am one proud mommy!
Monday, February 15, 2010
The paranoid woman...
Connor's chromosomal condition still confuses me more than words can describe. Instead of a syndrome we have a list of could be's, maybes, no's and yeses. I understand my role as his mother and I know that I need to do some things to check the list of maybe's each year. This is all fine to me but why cant I find any info on the internet or from his doctors at that regrading his specific deletion?
Today I decided to look up Connor's chromosomal translocation to see if that led me anywhere. Well, it did. Straight to leukemia. Now I am paranoid and think it might be a possibility that he could be at a higher risk due to the 12,21 translocation. Connor is relatively tiny for his age (due to missing genes) and does not grow very quickly. I wrote his genetics doctor explaining that yes I am over protective and yes I can be a bit paranoid at times but is this something I need to be worried about? I hope they don't think of me as being a freak or anything.
If I had some answers that better explained this whole situation, I might not be such a nervous wreck all the time.
ACK!
Thursday, October 8, 2009
And it starts yet again...
Appointments that is. I thought for sure once we had a diagnosis for Connor things would be ok. I was right in the sense that we feel ok knowing what is going on but very wrong in the sense that I thought we could just move on and live like it never happened. NOPE.
Here is the line up of what is to come....
Connor will be seeing a hand surgeon today.
He will be having a kidney and pelvic ultrasound next week.
I will be making an appointment to see a pediatric cardiologist for an echo cardiogram within the next week or two.
AND
I will also be making an appointment for Connor to see a pediatric urologist shortly.
Most of these appointments are all precautionary measures due to his deletion and translocation but some are because we know it is necessary.
The hand surgeon is something I have always know we need to see. Connor has dislocated thumbs on both hands (the left is much worse). He has always seen an orthopedic doctor but now that he is getting older-it is starting to hinder his abilities to do things. This problem is also caused by his missing genes. I am so hopeful that all he will need is a little brace on his hand to stretch the muscles and tendons but I am the only one this hopeful. My family thinks surgery might be needed. I guess I will find out in a few hours.
The appointment I am most nervous about is his kidney ultrasound. I know kidney problems and heart problems are common but his heart has always sounded great. Connor is ALWAYS thirsty. It just makes me a little nervous that it could be his kidneys. I am also nervous that he might not sit still long enough for the ultra sound. Eric will be with me at that one.
The other appointments will wait until we get back from a weekend trip to see a friend marry.
Here is the line up of what is to come....
Connor will be seeing a hand surgeon today.
He will be having a kidney and pelvic ultrasound next week.
I will be making an appointment to see a pediatric cardiologist for an echo cardiogram within the next week or two.
AND
I will also be making an appointment for Connor to see a pediatric urologist shortly.
Most of these appointments are all precautionary measures due to his deletion and translocation but some are because we know it is necessary.
The hand surgeon is something I have always know we need to see. Connor has dislocated thumbs on both hands (the left is much worse). He has always seen an orthopedic doctor but now that he is getting older-it is starting to hinder his abilities to do things. This problem is also caused by his missing genes. I am so hopeful that all he will need is a little brace on his hand to stretch the muscles and tendons but I am the only one this hopeful. My family thinks surgery might be needed. I guess I will find out in a few hours.
The appointment I am most nervous about is his kidney ultrasound. I know kidney problems and heart problems are common but his heart has always sounded great. Connor is ALWAYS thirsty. It just makes me a little nervous that it could be his kidneys. I am also nervous that he might not sit still long enough for the ultra sound. Eric will be with me at that one.
The other appointments will wait until we get back from a weekend trip to see a friend marry.
Monday, September 14, 2009
Vent Away
So I cant stop thinking about the "what if's" and they happen to be driving me batty.
What if Connor's peditrician had noticed the ridge in his forehead sooner? I noticed it pretty much at birth (they think his sutures were already closed then) but I didnt think anything of it because I didnt know it was something to be concerned about. Would Connor's brain NOT be underdeveloped if we had noticed sooner?
What if we had gotten Con into the Regional Center at an earlier age? Would he be making even more progress?
What if I had done something differently? Maybe I was too old to have a child? Did I cause this chromosome to be missing?
I cant find any support groups out there to help ease my mind and everyone around me seems to think he is just fine. I KNOW he is fine but at the same time, he needs lots of help and work just to do what other 17 and 18 month old children do on there own and even then, he cant really do them.
He was saying a few words a few months ago and those seem to be foreign to him now. He does pick up words here and there but, will they leave his vocabulary?
What does it mean when they say his brain is underdeveloped? I assume there is no damage so then-FIX IT! Develope that brain.
What if Connor gets teased? What will I do? I cant tell that child to stop. I cant talk to his/her parents but that is about it. All I can do is tell my child that he is absolutly the way he should be.
What if I didnt worry so much?
What if Connor's peditrician had noticed the ridge in his forehead sooner? I noticed it pretty much at birth (they think his sutures were already closed then) but I didnt think anything of it because I didnt know it was something to be concerned about. Would Connor's brain NOT be underdeveloped if we had noticed sooner?
What if we had gotten Con into the Regional Center at an earlier age? Would he be making even more progress?
What if I had done something differently? Maybe I was too old to have a child? Did I cause this chromosome to be missing?
I cant find any support groups out there to help ease my mind and everyone around me seems to think he is just fine. I KNOW he is fine but at the same time, he needs lots of help and work just to do what other 17 and 18 month old children do on there own and even then, he cant really do them.
He was saying a few words a few months ago and those seem to be foreign to him now. He does pick up words here and there but, will they leave his vocabulary?
What does it mean when they say his brain is underdeveloped? I assume there is no damage so then-FIX IT! Develope that brain.
What if Connor gets teased? What will I do? I cant tell that child to stop. I cant talk to his/her parents but that is about it. All I can do is tell my child that he is absolutly the way he should be.
What if I didnt worry so much?
Tuesday, August 11, 2009
The breakdown of our son Connor
We finally had our long awaited appointment today with Dr. G. It was a VERY long appointment with lots of questions asked, lots of information given and lots of questions still unanswered.
We got to our appointment at 130 and was seen right away only to have the doctor leave again for an hour to review Connor's MRI and CT scans. Once he returned poor C had fallen asleep. It was perfect because we got all of the questions out of the way before Connor was examined.
From what we gathered, Connor's condition is so rare that he could not find one case that matched Connor's exactly. Instead what he did was researched those closest to him and compared that way. Now that he has seen Connor he will now research Connor's specific symptoms and right a report for us in the next few weeks with all the research he has found.
From our questions and his information this is what we found out today-
Connor's frontal brain is underdeveloped but Dr. G feels confident that he will compensate eventually. This might be why he is physically delayed. It has nothing to do with the sutures closing too early (all of these "issues" are all caused by his chromosomal deletion).
He no longer seems to feel Connor will need surgery on his skull. Connor's brain is almost done developing and it has never been a concern due to his premature closure of the sutures. He feels that they were probably closed upon birth. The ridge in his forehead should not grow anymore but, if we feel it is we will be referred immediately to a specialist.
His new concern seems to be the thumbs. We see an orthopedic doctor every few months but he wants to see a hand specialist and make sure he doesn't have something called Clasp Thumb Condition.
Connor will probably be in some sort of special education classes growing up but because we are already part of the Regional Center, he is already on the right track getting extra help to help in in his development.
There is a 50/50 chance that Connor will pass this onto his own children and even though our blood showed that we did not pass it onto Con, there is a chance that something went wrong in the "creation" of Connor that it could happen again so we have decided it would be best to have just one wonderful child.
We will be getting a kidney and abdomen ultrasound on C because in the other cases that were similar to him, there were some children with kidney problems. They will also be looking at his testicles as they have not dropped yet and seem underdeveloped.
He will also get an echo cardiogram to rule out heart conditions. His heart sounds wonderful but because other children have had heart problems we must make sure.
These will probably be yearly things for Connor growing up.
Dr. G will be looking up each problem Connor is facing in his database to make sure it is all correlated to the missing piece of Chromosome 21.
Even though 21 has moved and attached itself to Chromosome 12, he is not concerned at all with 12. He will also be doing more research to find out exactly what all 30 or so genes that Connor is missing do.
To help further his progress and hopefully help in out for when he is ready for school , we will be starting speech and occupational therapy in the near future.
We will be seeing Dr. G again in one year. But he will be in contact with us periodically as he gathers new information.
It was a great appointment. It is just hard to not really know exactly what will happen with his future but it is great to know that technology gets better and better with time.
We got to our appointment at 130 and was seen right away only to have the doctor leave again for an hour to review Connor's MRI and CT scans. Once he returned poor C had fallen asleep. It was perfect because we got all of the questions out of the way before Connor was examined.
From what we gathered, Connor's condition is so rare that he could not find one case that matched Connor's exactly. Instead what he did was researched those closest to him and compared that way. Now that he has seen Connor he will now research Connor's specific symptoms and right a report for us in the next few weeks with all the research he has found.
From our questions and his information this is what we found out today-
Connor's frontal brain is underdeveloped but Dr. G feels confident that he will compensate eventually. This might be why he is physically delayed. It has nothing to do with the sutures closing too early (all of these "issues" are all caused by his chromosomal deletion).
He no longer seems to feel Connor will need surgery on his skull. Connor's brain is almost done developing and it has never been a concern due to his premature closure of the sutures. He feels that they were probably closed upon birth. The ridge in his forehead should not grow anymore but, if we feel it is we will be referred immediately to a specialist.
His new concern seems to be the thumbs. We see an orthopedic doctor every few months but he wants to see a hand specialist and make sure he doesn't have something called Clasp Thumb Condition.
Connor will probably be in some sort of special education classes growing up but because we are already part of the Regional Center, he is already on the right track getting extra help to help in in his development.
There is a 50/50 chance that Connor will pass this onto his own children and even though our blood showed that we did not pass it onto Con, there is a chance that something went wrong in the "creation" of Connor that it could happen again so we have decided it would be best to have just one wonderful child.
We will be getting a kidney and abdomen ultrasound on C because in the other cases that were similar to him, there were some children with kidney problems. They will also be looking at his testicles as they have not dropped yet and seem underdeveloped.
He will also get an echo cardiogram to rule out heart conditions. His heart sounds wonderful but because other children have had heart problems we must make sure.
These will probably be yearly things for Connor growing up.
Dr. G will be looking up each problem Connor is facing in his database to make sure it is all correlated to the missing piece of Chromosome 21.
Even though 21 has moved and attached itself to Chromosome 12, he is not concerned at all with 12. He will also be doing more research to find out exactly what all 30 or so genes that Connor is missing do.
To help further his progress and hopefully help in out for when he is ready for school , we will be starting speech and occupational therapy in the near future.
We will be seeing Dr. G again in one year. But he will be in contact with us periodically as he gathers new information.
It was a great appointment. It is just hard to not really know exactly what will happen with his future but it is great to know that technology gets better and better with time.
Wednesday, July 29, 2009
Are we playing games here?
So, back in June, Eric and I had our blood taken to see if the chromosome issue Connor is dealing with might have been passed from one of us and we had assumed we would get the results when we had our appointment on July 10. Well, of course they had said I had never made the appointment for July 10 and I had to reschedule for September 8.
I am still convinced that they deleted my appointment and because of that I had demanded an email and regular mail confirmation letter confirming our Sept. appointment.
I received and email last week from Connor's genetics counselor stating that our parent blood work would be ready in a few days. I emailed her back to thank her and reminded her that I still had not received the email or regular mail confirmation for Sept. She emailed me back again with a one line email stating she would contact that scheduling department about sending it out and she typed-Sept. 8, 2009 130pm. That was it. Is that an email confirmation?
So, last week, I received a phone call from the genetics counselor. She said our blood work was in and that they both came back normal. This means that Connor's missing chromosome and trans location started with him. This is a good thing in the sense that now we dont have to give the poor kid more tests to determine what is going on with him. We know the issue and now we just have to figure out exactly what this is going to entail, what will happen in the future and what other doctors might we need to see. She told me that when we see the doctor in Sept., he will go over all the "maybes" that might happen to Connor and we will discuss treatments and doctors for issues we already are aware due to his gene loss. She also said that they know all the names of the genes Connor is missing but don't know what some of them do. That makes me nervous. Does that mean there is not enough research done on them to know or does that mean they are not significant enough to have done research?
Well, here comes the kicker- I once again asked her while I had her on the phone to please send me the mail confirmation regarding his Sept. appointment. I explained once again that I did not want to be accused of not making an appointment and it was very important that I get that paper. She told me not to worry that it was in the mail. OK.
Well, two days later I still have not letter BUT, I get a phone call from her saying that there is a cancellation on August 11 at 130pm and we were the first on the list. I took it and she told me I would receive email confirmation and a letter in the mail. Within minutes I had the email. This email looked much different than the first confirmation from Sept. This was an actual formal letter with instructions, directions and it had a letter header from the hospital. I then got the letter in the mail one day later. Where is the Sept. one that she said was in the mail?
I am now assuming we NEVER had a Sept. appointment. I figure they were waiting until Eric and I got our blood work back to determine what was going on. Well, the issue at hand started with Connor not us and now somehow, it is important? So boom, I have an apt. in two week, I get a professional letter and all this information?
Did Connor not matter if the case was that he got this from one of us? This is crap and the system sucks. What am I 12? What kind of game are we playing here? This is a wonderful hospital but the service sucks. From the research I have been doing, this stuff is pretty common which I find insane.
I am just glad we will be seen in August and Connor can finally get the treatments he may need. I am getting more and more concerned about his sutures so I am hoping to get a referral then for a doctor other wise his pediatrician can refer us.
I think these people need some lessons in class!
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