St. Joseph's Feeding Clinic

Yesterday we took Sam to his 3rd visit to the feeding clinic. The doctor's and specialists were very pleased with Sam's progress. The neuro-developmental pediatrician felt that Sam required so much less suctioning which is a great sign. They also noted that Sam is much more vocal with the intent to communicate and he is moving a lot more as well. During trials where we had to help Sam facilitate a swallow he did well. He actually swallowed several times with stimulation. We still have a very, very, very, long way to go before we can even think about trying to give him food or liquids, but it is a good sign that he can be stimulated to swallow.

About St. Jo's...
St. Jo's is an excellent feeding and swallowing center for any child with feeding issues from texture sensitivity to situations as severe as Sam's. In my experience with feeding and swallowing disorders I have had a lot of families that went to St. Jo's and some loved it and some hated it. They are very set in their philosophy which I can understand may be a little scary for some parents that do not have a medical background. To my understanding they do not give up easily on even the most difficult situations. I think they are very knowledgeable and unpretentious. Anytime I have called with a question or concern my call has been returned that same day. I will add a link if anyone is interested in the program.
http://www.feedingcenter.org/

Words Speak Louder Then Actions

When I find that I'm in a funk I feel that it helps to look back on the past year and see all that we have accomplished, all that we have been through, all that we have suffered, and that we have SURVIVED! I try and look back and think what have we learned. What knowledge can we take with us to help with our next obstacle? Or, what can I use to help other families when I eventually start up my career again. It's funny, I look back and remember verbatim so many things that the doctors, nurses and therapists said to us while we were still in the hospital with Sam. For the most part, I have to say, I was and still am very impressed with the carefully thought out words that were used to explain to us that basically we were/ are in deep shit. But I remember when I was first going into labor the senior resident that was checking me out while I was in triage said, "You do know there is a good chance that something is going to be wrong with your baby?" At that time I did know that but no one was sure. But who says something like that to a women in labor. I felt like saying, "And what would you like me to do about that now jackass." It should be a requirment to have some course on bedside manner while these doctors are in medical school. What some medical professionals do not realize is that there words can impact an outcome just as much as there treatment. When I was working, families had told me stories where doctors and therapists basically said that there was no hope for their children. And many times this resulted in a kind of give up attitude on the parents part. Luckily in our case no one ever said NEVER. Even now when I ask Sam's specialists will he ever get off of his feeding tube. They look at me like I have three heads and say of course there's a great chance of that happening but it will take hard work. It is so grueling to wake up at 6am and begin the day doing therapy and only therapy with your child. Sometimes you just want to be the parent and have fun with your kid, but when professionals are telling you that all of this therapy is going to give Sam the best shot that he has in life, how can you do anything else. I know I need a lot of encouragment to do what I do everyday. It absolutely helps to have all of Sam's healthcare providers believe that he is going to do great things. Don't get me wrong, I don't care if they said he was doomed, I wold never give up on my child. But it certainly gives me an extra pop knowing that I am not the only one who believes in him.

Sam at The Pool

Its one thing to have a child with special needs, but it is quite another to have a child with special needs that has health compromises as well. Aside from the obvious heartache, the everyday enjoyment of life gets thrown out the window as well because you are basically stuck in the house all day long waiting for therapists, going to doctors.... I can't just throw Sam in the car seat and go because he chokes all the time on his own saliva. I need someone with me if I want to do anything out of the house with my child. This totally sucks because in my past life I was always out and about. I never considered myself a home body. I always had places to go and people to see. I was a mover and a shaker. Now I'm a sitter and a squatter. So Sunday morning I woke up with a ton of energy, kicked my husband out of bed and said, "We're going to N.J." We took Sam to see his girlfriend. Sam went swimming for the first time and loved it!!! His girlfriend loved Scott and was all over him. Sam does not like sharing his Daddy with anyone. Completely appropriate for an 11 month old Sam got jealous and kept hitting and pushing her away from his Daddy. I was very impressed. But most importantly Sam did not end up in the hospital or sick from this visit. We only ventured out with Sam for pleasure two other times. Both those experiences ended up with Sam being extremely ill, but not this time. Thank god for small miracles.

Grandpa Band's Request

My father indirectly pushed me to start a blog more to help other parents of children with special needs rather then to inform friends and family of Sam's progress. I feel both are important. And certainly if our stories can help or inspire anyone else then the time and efforts put into all of this will be worth it. My dad thought it was necessary to post Sam's history, so for those of you who already know this sorry for the monotony.

Sam was born at 37 wks gestation at St. Lukes Roosevelt hospital via vaginal delivery weighing 6lbs 13 oz. Prior to his birth I was diagnosed with polyhydromnios at approx 35 wks gestation (too much amniotic fluid). I was in labor for 2 ½ days when I spiked a fever and the Drs induced me to speed up the process just in case there was an infection in the uterus. When Samuel was born he received an apgar score of 9.9 by a totally incompetent pediatrician. My Gyn noticed Sam had a floppy neck. Once they put Sam on me I noticed that only the right side of his face was moving. I stimulated him for a root but got nothing. I also noticed the he was very gurgly, had a cat like cry and was bubbling from his mouth and had no suck, no cough and no gag. I obviously freaked out but they told me I was being paranoid and sent me to the maternity unit with my baby. Where I continued to tell everyone he was presenting like a stroke patient as he had limited movement on the left side of his body as well. Finally they took him to the NICU. He was seen that evening by Steven Wolf (Ped Neuro). MRI done the next day showed nothing too significant. NICU tried to feed Sam by mouth which I told them would be a HUGE mistake because he wasn’t managing his secretions so of course they did it anyway and developed an Aspiration pnuemonia needed C-pap and antibiotic. Sam was fed via OG for the 2 weeks we remained at St. Lukes. We left St. Lukes because the Surgeon wanted to do a G-tube with a fundo. I wanted to discuss further, he didn’t have time to discuss so I told them no thank you and went to Columbia P for the 1 million dollar work up and second opinions for feeding tube placement. At Col he was fed via NGT. To sum up Sam has multi cranial nerve involvement CN 7-12. It seems to be left sided only??? So deaf in L ear, some hearing loss in R ear, paralyzed L Vocal Cord, L facial paralysis (improving). Sam has been seen by genetics, 4 ENTs, 3 neurologists, 3 opthamologists, 2 pulmonologists, 1 GI, 1 Surgeon, and 2 physiatrists. At Columbia Sam had another MRI which showed 3 bi-lateral lesions between the Pons, Medulla, basal ganglia (brainstem). So basically where CN 7-10 originate. Genetic work-ups came back normal including extra molecular studies that were done to closely look at malformations in the DNA. The neurologists all seem to agree that some ischemic event took place during pregnancy that caused a lack of O2 flow which disrupted the formation of deep nuclei in the brainstem. All of our Drs. Were guardedly optimistic that Sam would regain most function back since the brain is so plastic and we already began to see some slow but steady progress. Our GI (Joseph Levy) did not want Sam to get the fundo so he suggested do a G-J tube. The Sx would not do a G-J tube at Columbia so we had to transfer Sam to NYU were he had one placed by Dr. Nadler. Before we left Col they did an esophagram which showed severe reflux. He also asp the barium do to yet another incompetent Dr. who refused to heed my warning and Sam ended up with another Asp PNA and we had to stay at col for an extra 10 days where he was treated with more antiobiotic and Cpap. At Col Sam received PT, OT, and feeding tx. Use of non-nutritive items only. We eventually were able to elicit a suck with prompting (stroking tongue and palate). Since Sam has had his Sx he regressed a little do to the anesthesia and contracting RSV. Sam still has difficulty managing his secretions. During waking hrs he needs to be suctioned frequently. He is on continuous feeds of 33ccs per hr via the G-J tube. Sam has made some gains. The facial paralysis seems to be improving, can produce a suck when prompted, moves left side better, has a strong voice, & has increased neck strength.

I actually wrote this right after Sam came home from the hospital in October. My pediatrician thought it would be a good idea for me to type up a history and hand it to any new Dr. Sam might see so that I would not have to relive our experience over and over again. God bless that man!

Things are very different for Sam now then they were 7 months ago. We know that Sam's hearing is normal, he does not need as much suctioning, his vocal cord paresis probably resolved as he has very strong vocal quality, his face is more symetrical, and his movements are much stronger. We still have a huge road ahead of us. There is so much we still do not know. But what we can tell you is that Sam has the BEST team ever!!! We are very lucky that all of his care givers are so dedicated and competent this of course includes all of his therapists, nurses and doctors. So we are just going to keep on keeping on and do the best we can.

What's new?

I decided to take the plunge and starting posting our life for all to see because I know so many of our friends and family want to know "What's new with Sam?" I know it is hard for most people to imagine how emotionally draining that question is especially when you have a child with as many compromises as we do. So I think I am ready to start letting more people in to share our experiences good and bad through this blog. Thank you all for your thoughts and prayers.


Yesterday we took Sam to an osteopathic movement treatment center in the Bronx. Apparently these doctors feel that certain manipulations can help a child or an adult achieve there maximal potential. I guess it is like cranio sacral therapy but on a different level. This particular doctor felt like Sam could benefit greatly from this treatment. So along with the 20 other specialists we are taking Sam too here is another one to add to our list. Sam is doing pretty well considering all of his obstacles. He has been managing his secretions better, which basically means he has not turned blue from drowning on his own saliva for a while. Sam's head and neck strength is definitely improving. He is not yet sitting up but we know in time he will get there. Cognitively I have to say Sam is pretty smart. He is following directions, making choices, starting to vocalize a psuedo "no" and has a very specific vocalization for "more." I know that is amazing for any 10 1/2 month old, but what do you expect with a mom who's an SLP.

Testing the Waters

On a whim I decided to try ans see what this whole blogg thing was all about. Since so many people are always asking about how we are doing I thought it may be easier to just post updates on line where everyone can see. So be patient to the technologically challenged while I figure out this whole thing.